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Guidry JPD, Laestadius LI, Burton CW, Miller CA, Perrin PB, Campos-Castillo C, Chelimsky T, Gharbo R, Carlyle KE. Patient-provider relationships and long COVID: A cross-sectional survey about impact on quality of life. Disabil Health J 2025; 18:101722. [PMID: 39472233 DOI: 10.1016/j.dhjo.2024.101722] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/05/2024] [Revised: 10/18/2024] [Accepted: 10/18/2024] [Indexed: 04/26/2025]
Abstract
BACKGROUND In the United States (U.S.), it is estimated that 17.6 % of adults have experienced Long COVID, a condition where symptoms newly develop and linger after initial COVID-19 infection. Long COVID is associated with significantly reduced quality of life (QoL), and patient-provider relationships have been shown to influence QoL for patients in general. OBJECTIVE The objective for this study was to better understand the role of patient-provider relationships in shaping QoL among U.S. adults with Long COVID. METHODS This study carried out an online survey among U.S. adult with Long COVID (N = 792). RESULTS Respondents with at least a bachelor's degree reported higher QoL, and older respondents were more likely to report lower QoL; trust in providers was a significant predictor of higher QoL, while dismissal of Long COVID symptoms was associated with lower QoL (all p < .05). CONCLUSIONS Healthcare providers should be aware of the importance of trust in the relationship with their Long COVID patients and the impact this may have on patients' QoL. Researchers and policy makers should include an increasing focus on training for providers who treat patients with Long COVID in order to strengthen patient-provider relationships.
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Affiliation(s)
- Jeanine P D Guidry
- Tilburg University, Department of Communication and Cognition, Warandestraat 2, 5037 AB, Tilburg, the Netherlands.
| | - Linnea I Laestadius
- University of Wisconsin - Milwaukee, Zilber College of Public Health, Milwaukee, WI, USA
| | - Candace W Burton
- University of Nevada Las Vegas, School of Nursing, Las Vegas, NV, USA
| | - Carrie A Miller
- Virginia Commonwealth University School of Medicine, Department of Family Medicine and Population Health, Richmond, VA, USA
| | - Paul B Perrin
- University of Virginia, School of Data Science and Department of Psychology, Charlottesville, VA, USA
| | | | - Thomas Chelimsky
- Virginia Commonwealth University School of Medicine, Department of Neurology, Richmond, VA, USA
| | - Raouf Gharbo
- Virginia Commonwealth University School of Medicine, Department of Physical Medicine and Rehabilitation, Richmond, VA, USA
| | - Kellie E Carlyle
- Virginia Commonwealth University, School of Public Health, Richmond, VA, USA
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Godden AR, Micha A, Barry PA, Krupa KDC, Pitches CA, Kirby AM, Rusby JE. Preoperative three-dimensional simulation of the breast appearance after wide local excision or level one oncoplastic techniques for breast-conserving treatment does not set unrealistic expectations for aesthetic outcome: One-year follow-up of a randomised controlled trial. J Plast Reconstr Aesthet Surg 2024; 97:230-236. [PMID: 39168032 DOI: 10.1016/j.bjps.2024.07.027] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/15/2024] [Revised: 05/03/2024] [Accepted: 07/08/2024] [Indexed: 08/23/2024]
Abstract
INTRODUCTION Simulation of aesthetic outcomes of wide local excision and level one oncoplastic breast conserving treatment (BCT) using 3-dimensional surface imaging (3D-SI) prepares women for their aesthetic outcome. It remains unknown whether women's memory of this information at the one-year follow-up matches their perception of reality or affects the quality of life. METHODS With ethical approval, a prospective 3-arm RCT was conducted and it included 3D-simulation, viewing post-operative 2D photographs of other women and standard care. At one-year post-surgery, the participants completed a visual analogue scale (VAS) for the question "How well do you think the information about how your breasts are likely to look after surgery reflects how they actually look today?" and the BCT BREAST-Q module. The Kruskal-Wallis test was used to examine between-group differences at a 5% significance level. RESULTS From 2017 to 2019, 117 women completed the primary endpoint of being informed about the aesthetic outcome via verbal description, photographs or simulation. Seventy-eight (74%) of the 106 women who remained eligible attended the one-year follow-up. The standardised preoperative 3D-SI simulation did not affect the patient's perception of the aesthetic outcome compared to standard care or viewing 2D photographs as measured using the VAS (p = 0.40) or BREAST-Q scores for satisfaction with information (p = 0.76), satisfaction with breasts (p = 0.70), and psychosocial wellbeing domains (p = 0.81). DISCUSSION Viewing their own 3D-SI standardised simulation did not significantly affect how the participants perceived their aesthetic outcome. In addition, it did not alter the patient-reported satisfaction. These results demonstrated that simulation for wide local excision or level one oncoplastic surgery does not set unrealistic expectations of the aesthetic outcome when used in a preoperative setting. SYNOPSIS The use of a non-bespoke three-dimensional simulation of the aesthetic outcome for breast conserving treatment in the preoperative setting does not over-inflate expectations compared to standard care.
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Affiliation(s)
- Amy R Godden
- Royal Marsden Hospital, Downs Road, London SM2 5PT, UK; Institute of Cancer Research, Cotswold Road, London SM2 5NG, UK
| | | | - Peter A Barry
- Royal Marsden Hospital, Downs Road, London SM2 5PT, UK
| | | | | | - Anna M Kirby
- Royal Marsden Hospital, Downs Road, London SM2 5PT, UK; Institute of Cancer Research, Cotswold Road, London SM2 5NG, UK
| | - Jennifer E Rusby
- Royal Marsden Hospital, Downs Road, London SM2 5PT, UK; Royal Marsden Hospital, Fulham Road, London SW3 6 JJ, UK.
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Juge PA, Kragstrup TW, Perez-Garcia LF, Frãzao-Mateus E, Makri S, Boyd P, Primdahl J, Ferreira RJO, Vliet Vlieland TPM, Ndosi M, Kiltz U, Landewé R, Lauper K, de Hooge M. Evaluating the participation of junior members and patient and healthcare professionals representatives in EULAR task forces: results from an international survey. RMD Open 2024; 10:e004177. [PMID: 38866591 PMCID: PMC11177770 DOI: 10.1136/rmdopen-2024-004177] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/01/2024] [Accepted: 04/23/2024] [Indexed: 06/14/2024] Open
Abstract
OBJECTIVE European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members). METHODS An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions. RESULTS In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%). CONCLUSION Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.
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Affiliation(s)
- Pierre-Antoine Juge
- Service de Rhumatologie, Hôpital Bichat-Claude Bernard, AP-HP, Paris, France
- INSERM UMR 1152, Université de Paris, Paris, France
| | - Tue Wenzel Kragstrup
- Department of Biomedicine, Aarhus University, Aarhus, Denmark
- Department of Rheumatology, Aarhus Universitetshospital, Aarhus, Denmark
- Sector for Rheumatology, Diagnostic Center, Silkeborg Regional Hospital, Silkeborg, Denmark
| | | | - Elsa Frãzao-Mateus
- Portuguese League Against Rheumatic Diseases (LPCDR), Lisbon, Portugal
- EULAR Patient Research Partner Network, EULAR, Zurich, Switzerland
| | - Souzi Makri
- Cyprus League Against Rheumatism, Nicosia, Cyprus
| | - Peter Boyd
- School of Pharmacy, Medical Biology Centre, Queen's University Belfast, Belfast, UK
| | - Jette Primdahl
- University Hospital of Southern Denmark, Danish Hospital for Rheumatic Diseases, Sønderborg, Denmark
- Department of Regional Health Research, University of Southern Denmark, Odense, Denmark
- Danish Hospital for Rheumatic Diseases, University Hospital of Southern Denmark, Sønderborg, Denmark
| | - Ricardo J O Ferreira
- Nursing Research, Innovation and Development Centre of Lisbon (CIDNUR), Higher School of Nursing of Lisbon, Lisboa, Portugal
- Health Sciences Research Unit: Nursing (UICiSA:E), Coimbra, Portugal
| | - Theodora P M Vliet Vlieland
- Orthopaedics, Rehabilitation and Physical Therapy, J11, Leiden University Medical Center, Leiden, The Netherlands
| | - Mwidimi Ndosi
- School of Health and Social Wellbeing, College of Health Science and Society, University of the West of England, Bristol, UK
- Academic Rheumatology Unit, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK
| | - Uta Kiltz
- Rheumazentrum Ruhrgebiet, Herne, Germany
| | - Robert Landewé
- Clinical Immunology & Rheumatology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
- Rheumatology, Atrium Medical Center, Heerlen, The Netherlands
| | - Kim Lauper
- Division of Rheumatology, Geneva University Hospitals, Geneve, Switzerland
| | - Manouk de Hooge
- Department of Rheumatology, University Hospital Ghent, Gent, Belgium
- Molecular Immunology and Inflammation Unit, VIB-UGent Center for Inflammation Research, Zwijnaarde, Belgium
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Wojcik KM, Kamil D, Zhang J, Wilson OWA, Smith L, Butera G, Isaacs C, Kurian A, Jayasekera J. A scoping review of web-based, interactive, personalized decision-making tools available to support breast cancer treatment and survivorship care. J Cancer Surviv 2024:10.1007/s11764-024-01567-6. [PMID: 38538922 PMCID: PMC11436482 DOI: 10.1007/s11764-024-01567-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/29/2023] [Accepted: 03/12/2024] [Indexed: 09/29/2024]
Abstract
PURPOSE We reviewed existing personalized, web-based, interactive decision-making tools available to guide breast cancer treatment and survivorship care decisions in clinical settings. METHODS The study was conducted using the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). We searched PubMed and related databases for interactive web-based decision-making tools developed to support breast cancer treatment and survivorship care from 2013 to 2023. Information on each tool's purpose, target population, data sources, individual and contextual characteristics, outcomes, validation, and usability testing were extracted. We completed a quality assessment for each tool using the International Patient Decision Aid Standard (IPDAS) instrument. RESULTS We found 54 tools providing personalized breast cancer outcomes (e.g., recurrence) and treatment recommendations (e.g., chemotherapy) based on individual clinical (e.g., stage), genomic (e.g., 21-gene-recurrence score), behavioral (e.g., smoking), and contextual (e.g., insurance) characteristics. Forty-five tools were validated, and nine had undergone usability testing. However, validation and usability testing included mostly White, educated, and/or insured individuals. The average quality assessment score of the tools was 16 (range: 6-46; potential maximum: 63). CONCLUSIONS There was wide variation in the characteristics, quality, validity, and usability of the tools. Future studies should consider diverse populations for tool development and testing. IMPLICATIONS FOR CANCER SURVIVORS There are tools available to support personalized breast cancer treatment and survivorship care decisions in clinical settings. It is important for both cancer survivors and physicians to carefully consider the quality, validity, and usability of these tools before using them to guide care decisions.
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Affiliation(s)
- Kaitlyn M Wojcik
- Health Equity and Decision Sciences Research Laboratory, Division of Intramural Research, National Institute On Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, 20892, USA
| | - Dalya Kamil
- Health Equity and Decision Sciences Research Laboratory, Division of Intramural Research, National Institute On Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, 20892, USA
| | | | - Oliver W A Wilson
- Health Equity and Decision Sciences Research Laboratory, Division of Intramural Research, National Institute On Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, 20892, USA
| | - Laney Smith
- Frederick P. Whiddon College of Medicine, Mobile, AL, USA
| | - Gisela Butera
- Office of Research Services, National Institutes of Health Library, Bethesda, MD, USA
| | - Claudine Isaacs
- Georgetown University Medical Center and Cancer Prevention and Control Program, Georgetown-Lombardi Comprehensive Cancer Center, Washington, DC, USA
| | - Allison Kurian
- Departments of Medicine and Epidemiology and Population Health at Stanford University School of Medicine, Stanford, CA, USA
| | - Jinani Jayasekera
- Health Equity and Decision Sciences Research Laboratory, Division of Intramural Research, National Institute On Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, 20892, USA.
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Shepherd T, Trinder M, Theophilus M. Does virtual reality in the preoperative setting for colorectal cancer surgery improve patient understanding? A randomized pilot study. ANZ J Surg 2024; 94:391-396. [PMID: 37994285 DOI: 10.1111/ans.18787] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/27/2023] [Revised: 10/29/2023] [Accepted: 11/08/2023] [Indexed: 11/24/2023]
Abstract
BACKGROUND Virtual reality (VR) enhanced radiology could help improve communication with colorectal cancer patients and therefore increase understanding in the perioperative setting. The objective of this pilot trial is to assess the feasibility of conducting a randomized control trial in terms of recruitment, use and acceptability of the VR technology and validity of data collection methods. METHODS A prospective, single-centre randomized control trial was conducted at St John of God Midland Hospital in Western Australia from November to December 2021. After standard informed consent with their surgeon, elective patients planned for resection of colorectal cancer were randomized to either 'standard consent' (shown computed tomography (CT) images only) or 'VR consent' (shown CT images and immersive VR models). RESULTS Nine patients were recruited (four control; five intervention). There was a trend towards improved patient reported understanding without reaching statistical significance. Most patients preferred the use of VR as compared to CT as an educational tool during the consent process (P = 0.03). There were no adverse effects. CONCLUSION VR was well tolerated and patients enjoyed using the technology. Its use in an outpatient clinic setting for elective colorectal cancer surgery is feasible. Improvement in patient understanding using VR compared to standard consent processes in colorectal surgery should be tested in a statistically powered, high quality study design.
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Affiliation(s)
- Talia Shepherd
- General Surgery Department, SJOG Midland Public and Private Hospital, Midland, Western Australia, Australia
| | - Matthew Trinder
- General Surgery Department, SJOG Midland Public and Private Hospital, Midland, Western Australia, Australia
| | - Mary Theophilus
- General Surgery Department, SJOG Midland Public and Private Hospital, Midland, Western Australia, Australia
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Ozdemir S, Lee JJ, Yeo KK, Sim KLD, Finkelstein EA, Malhotra C. A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure. Med Decis Making 2023; 43:863-874. [PMID: 37767897 DOI: 10.1177/0272989x231201609] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/29/2023]
Abstract
OBJECTIVE Among patients with heart failure (HF), we examined 1) the evolution of patient involvement in decision making over 2 y, 2) the association of patient characteristics with decision-making roles, and 3) the association of decision-making roles with distress, spiritual well-being, and quality of physician communication. METHODS We administered the survey every 4 mo over 24 mo to patients with New York Heart Association class 3/4 symptoms recruited from inpatient clinics. The decision-making roles were categorized as no patient involvement, physician/family-led, joint (with family and/or physicians), patient-led, or patient-alone decision making. The associations between patient characteristics and decision-making roles were assessed using a mixed-effects ordered logistic regression, whereas those between patient outcomes and decision-making roles were investigated using mixed-effects linear regressions. RESULTS Of the 557 patients invited, 251 participated in the study. The most common roles in decision making at baseline assessment were "no involvement" (27.53%) and "patient-alone decision making" (25.10%). The proportions of different decision-making roles did not change over 2 y (P = 0.37). Older age (odds ratio [OR] = 0.97; P = 0.003) and being married (OR = 0.63; P = 0.035) were associated with lower involvement in decision making. Chinese ethnicity (OR = 1.91; P = 0.003), higher education (OR = 1.87; P = 0.003), awareness of terminal condition (OR = 2.00; P < 0.001), and adequate self-care confidence (OR = 1.74; P < 0.001) were associated with greater involvement. Compared with no patient involvement, joint (β = -0.58; P = 0.026) and patient-led (β = -0.59; P = 0.014) decision making were associated with lower distress, while family/physician-led (β = 4.37; P = 0.001), joint (β = 3.86; P < 0.001), patient-led (β = 3.46; P < 0.001), and patient-alone (β = 3.99; P < 0.001) decision making were associated with better spiritual well-being. CONCLUSION A substantial proportion of patients was not involved in decision making. Patients should be encouraged to participate in decision making since it is associated with lower distress and better spiritual well-being. HIGHLIGHTS The level of involvement in medical decision making did not change over time among patients with heart failure. A substantial proportion of patients were not involved in decision making throughout the 24-mo study period.Patients' involvement in decision making varied by age, ethnicity, education level, marital status, awareness of the terminal condition, and confidence in self-care.Compared with no patient involvement in decision making, joint and patient-led decision making were associated with lower distress, and any level of patient involvement in decision making was associated with better spiritual well-being.
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Affiliation(s)
- Semra Ozdemir
- Signature Program in Health Services and Systems Research, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
- Department of Population Health Sciences, Duke Clinical Research Institute, Duke University, USA
| | - Jia Jia Lee
- Research Associate, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
| | | | | | - Eric Andrew Finkelstein
- Signature Program in Health Services and Systems Research, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
- Saw Swee Hock School of Public Health, National University of Singapore, Singapore
- Duke Global Health Institute, Duke University, USA
| | - Chetna Malhotra
- Signature Program in Health Services and Systems Research, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
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Tallroth L, Mobargha N, Velander P, Becker M, Klasson S. Expander prosthesis and DIEP flaps in delayed breast reconstruction: Sensibility, patient-reported outcome, and complications in a five-year randomised follow-up study. J Plast Surg Hand Surg 2023; 58:101-109. [PMID: 37747180 DOI: 10.2340/jphs.v58.13477] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/11/2023] [Accepted: 08/17/2023] [Indexed: 09/26/2023]
Abstract
Breast reconstruction is a given choice for many women following mastectomy. There are a multitude of methods available today, and thus, comparative studies are essential to match patients with suitable methods. The aim of this study was to compare 5-year outcomes following delayed breast reconstruction with expander prosthesis (EP) and with deep inferior epigastric perforator (DIEP) flaps. Seventy-three patients, previously randomised to either a permanent EP or a DIEP flap breast reconstruction, were invited for a 5-year follow-up. Assessments included symmetry measurements, breast sensibility with Semmes-Weinstein monofilaments and patient-reported outcome (PRO) with the BREAST-Q. Complications within the first 5 postoperative years were recorded. Additionally, BREAST-Q questionnaires were collected from non-randomised patients with an EP breast reconstruction. Between 2019 and 2022, 65 patients completed the follow-ups. Symmetry and PRO were significantly higher in the DIEP flap group. However, EP-reconstructed breasts were significantly more sensate and demonstrated areas with protective sensibility, unlike the DIEP flap breasts. The overall complication rates were comparable between the two groups (p = 0.27). Regression analysis identified body mass index as a risk factor for reoperation in general anaesthesia and for wound infection. No significant differences were found in a comparison of the randomised and the non-randomised EP groups' BREAST-Q results. This randomised 5-year follow-up study found PRO to be favourable following a DIEP flap reconstruction and sensibility to be better in EP reconstructions. The complication rates were comparable; however, longer follow-ups are warranted to cover the complete lifespans of the two breast reconstruction methods.
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Affiliation(s)
- Linda Tallroth
- Department of Clinical Sciences in Malmö, Lund University.
| | - Nathalie Mobargha
- Department of Reconstructive Plastic Surgery, Karolinska University Hospital, Stockholm, Sweden
| | - Patrik Velander
- Department of Clinical Sciences in Malmö, Lund University, Sweden; Department of Plastic and Reconstructive Surgery, Skåne University Hospital, Malmö, Sweden
| | - Magnus Becker
- Department of Clinical Sciences in Malmö, Lund University, Sweden; Department of Plastic and Reconstructive Surgery, Skåne University Hospital, Malmö, Sweden
| | - Stina Klasson
- Department of Clinical Sciences in Malmö, Lund University, Sweden; Department of Plastic and Reconstructive Surgery, Skåne University Hospital, Malmö, Sweden
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Waddell A, Goodwin D, Spassova G, Bragge P. "The Terminology Might Be Ahead of Practice": Embedding Shared Decision Making in Practice-Barriers and Facilitators to Implementation of SDM in the Context of Maternity Care. MDM Policy Pract 2023; 8:23814683231199943. [PMID: 37743932 PMCID: PMC10517621 DOI: 10.1177/23814683231199943] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/05/2023] [Accepted: 07/20/2023] [Indexed: 09/26/2023] Open
Abstract
Background. It is a patient's right to be included in decisions about their health care. Implementing shared decision making (SDM) is important to enable active communication between clinicians and patients. Although health policy makers are increasingly mandating SDM implementation, SDM adoption has been slow. This study explored stakeholders' organizational- and system-level barriers and facilitators to implementing policy mandated SDM in maternity care in Victoria, Australia. Method. Twenty-four semi-structured interviews were conducted with participants including clinicians, health service administrators and decision makers, and government policy makers. Data were mapped to the Theoretical Domains Framework to identify barriers and facilitators to SDM implementation. Results. Factors identified as facilitating SDM implementation included using a whole-of-system approach, providing additional implementation resources, correct documentation facilitated by electronic medical records, and including patient outcomes in measurement. Barriers included health service lack of capacity, unclear policy definitions of SDM, and policy makers' lack of resources to track implementation. Conclusion. This is the first study to our knowledge to explore barriers and facilitators to SDM implementation from the perspective of multiple actors following policy mandating SDM in tertiary health services in Australia. The primary finding was that there are concerns that SDM implementation policy is outpacing practice. Nonclinical staff play a crucial role translating policy to practice. Addressing organizational- and system-level barriers and facilitators to SDM implementation should be a key concern of health policy makers, health services, and staff. Highlights New government policies require shared decision making (SDM) implementation in hospitals.There is limited evidence for how to implement SDM in hospital settings.There are concerns SDM implementation policy is outpacing practice.Understanding and capacity for SDM varies considerably among stakeholders.Whole of system approaches and electronic medical records are seen to facilitate SDM.
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Affiliation(s)
- Alex Waddell
- Monash Sustainable Development Institute, Monash University, Clayton, VIC, Australia
- Safer Care Victoria, Victorian Department of Health, Melbourne, VIC, Australia
| | - Denise Goodwin
- Behaviour Works Australia Health Programs, Monash Sustainable Development Institute, Monash University, Clayton, VIC, Australia
| | - Gerri Spassova
- Department of Marketing, Monash Business School, Caulfield East, VIC, Australia
| | - Peter Bragge
- Monash Sustainable Evidence Review Service, Monash Sustainable Development Institute, Monash University, Clayton, VIC, Australia
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Ramkumar SP, Lal D, Miglani A. Considerations for shared decision-making in treatment of chronic rhinosinusitis with nasal polyps. FRONTIERS IN ALLERGY 2023; 4:1137907. [PMID: 36970067 PMCID: PMC10036764 DOI: 10.3389/falgy.2023.1137907] [Citation(s) in RCA: 4] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/05/2023] [Accepted: 02/13/2023] [Indexed: 03/12/2023] Open
Abstract
Shared decision-making is an approach where physicians and patients work together to determine a personalized treatment course. Such an approach is integral to patient-centered care in chronic rhinosinusitis with nasal polyps (CRSwNP). CRSwNP is a chronic inflammatory condition of the sinonasal cavity that can severely impact physical health, smell, and quality of life (QOL). Traditional standard-of-care treatment options include topical (i.e. sprays) and oral corticosteroids and endoscopic sinus surgery, but more recently, novel corticosteroid delivery methods (i.e. high volume irrigations, recently-approved exhalation breath-powered delivering devices, and drug-eluting steroid implants) and 3 new FDA approved biologics directed against type II immunomodulators have become available. The availability of these therapeutics offers exciting new opportunities in CRSwNP management but requires personalized and shared-decision making as each modality has variable impacts on CRSwNP and related comorbid conditions. Studies have published treatment algorithms, but the practical use of these lean guidelines is heavily influenced by the lens of the treating physician, the most common being otolaryngologists and allergy immunologists. Clinical equipoise occurs when there is no basis for one intervention to be regarded as “better” than another. While most guidelines, in general, support the use of topical corticosteroids with or without oral corticosteroids followed by ESS for the majority of unoperated CRSwNP patients, there are situations of clinical equipoise that arise particularly in CRSwNP who have failed surgery or those with severe comorbid conditions. In the shared decision-making process, clinicians and patients must consider symptomatology, goals, comfort, compliance, treatment efficacy, and treatment cost when determining the initial choice of therapy and escalation of therapy with the potential use of multiple modalities for recalcitrant CRSwNP. A summary of salient considerations that might constitute shared decision-making is presented in this summary.
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Affiliation(s)
- Shreya P. Ramkumar
- Department of Otolaryngology – Head and Neck Surgery, Mayo Clinic Hospital, Phoenix, AZ, United States
- Saint Louis University School of Medicine, Saint Louis, MO, United States
| | - Devyani Lal
- Department of Otolaryngology – Head and Neck Surgery, Mayo Clinic Hospital, Phoenix, AZ, United States
| | - Amar Miglani
- Department of Otolaryngology – Head and Neck Surgery, Mayo Clinic Hospital, Phoenix, AZ, United States
- Correspondence: Amar Miglani
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10
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Madge OL, Marincaș AM, Daha C, Simion L. Health information seeking behaviour and decision making by patients undergoing breast cancer surgery: A qualitative study. Health Info Libr J 2023. [PMID: 36861854 DOI: 10.1111/hir.12480] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/25/2022] [Revised: 12/30/2022] [Accepted: 02/17/2023] [Indexed: 03/03/2023]
Abstract
BACKGROUND Information is critical for patients having to decide about the best treatment option, and an in-depth understanding of their information behaviour can help health and information services to improve and facilitate their access to reliable information. OBJECTIVE To investigate the health information-seeking behaviour and information sources and their roles in decision making among breast cancer patients in Romania in the context of the surgical treatment. METHODS Semi-structured interviews were conducted with 34 patients who were treated surgically for breast cancer at the Bucharest Oncology Institute. RESULTS Most participants searched for information independently, before and after the operation, and their information needs evolved during the progression of their disease. The surgeon was regarded as the most trusted source of information. Most patients adopted a paternalistic or a shared approach for decision making. DISCUSSION Besides findings consistent with research from other countries, our study also revealed findings in contrast to previous research. None of the interviewed patients made any reference to the library as a source of information even if books were mentioned. CONCLUSIONS Health information specialists should develop a detailed guide and online information services to help physicians and other health professionals to provide relevant and reliable health care information to surgical inpatients from Romania.
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Affiliation(s)
- Octavia-Luciana Madge
- Faculty of Letters (Department of Communication Sciences) and Doctoral School in Communication Sciences, University of Bucharest, Bucharest, Romania
- First Clinic of General Surgery and Surgical Oncology, Bucharest Oncology Institute, Bucharest, Romania
| | - Augustin Marian Marincaș
- First Clinic of General Surgery and Surgical Oncology, Bucharest Oncology Institute, Bucharest, Romania
- Faculty of Medicine (Department of General Surgery) "Carol Davila" University of Medicine and Pharmacy Bucharest, Bucharest, Romania
| | - Claudiu Daha
- First Clinic of General Surgery and Surgical Oncology, Bucharest Oncology Institute, Bucharest, Romania
- Faculty of Medicine (Department of General Surgery) "Carol Davila" University of Medicine and Pharmacy Bucharest, Bucharest, Romania
| | - Laurențiu Simion
- First Clinic of General Surgery and Surgical Oncology, Bucharest Oncology Institute, Bucharest, Romania
- Faculty of Medicine (Department of General Surgery) "Carol Davila" University of Medicine and Pharmacy Bucharest, Bucharest, Romania
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11
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Mortelmans L, Bosselaers S, Goossens E, Schultz H, Dilles T. Shared decision making on medication use between nurses and patients in an oncology setting: A qualitative descriptive study. Eur J Oncol Nurs 2023; 64:102321. [PMID: 37146350 DOI: 10.1016/j.ejon.2023.102321] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/29/2022] [Revised: 02/25/2023] [Accepted: 03/10/2023] [Indexed: 03/14/2023]
Abstract
PURPOSE (i) To explore patients' and nurses' experiences with medication-related shared decision making (SDM) (i.e., familiarity with the concept, application of medication-related SDM, barriers and facilitators towards its application) and (ii) to explore their role perceptions, respectively. METHODS A qualitative study was conducted in which seven interviews with oncological patients and a focus group interview with six nurses were performed. Prior to the interviews, observations of the application of shared decision making were conducted using the OPTION-12 scale. The observations were used exclusively to trigger the group discussion. Data were collected from November 2020 until March 2021. RESULTS According to participants, the application of SDM regarding medication by nurses in oncology is limited. Barriers mentioned were health status, medication-related knowledge, the therapeutic nurse-patient relationship, time pressures and workload. Patients valued nurses' contribution to SDM regarding medication and perceived them as key persons because of their advocating, informative, facilitating and supportive role. Individual and contextual factors determined patients' desire for involvement in medication-related decisions. DISCUSSION Participants solely concentrated on SDM concerning drug choice and management of therapeutic and adverse effects. The patients' and nurses' experiences and perceptions towards SDM in other domains of pharmaceutical care need further investigation.
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Affiliation(s)
- Laura Mortelmans
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium; Research Foundation Flanders (FWO), Leuvenseweg 38, 1000, Brussel, Belgium.
| | - Sarah Bosselaers
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium; Department of Oncology, Gasthuiszusters Antwerpen (GZA Hospital), Oosterveldlaan 24, 2610, Wilrijk, Belgium
| | - Eva Goossens
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium; Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35, 3000, Leuven, Belgium; Department of Patient Care, Antwerp University Hospital (UZA), Drie Eikenstraat 655, 2650, Edegem, Belgium
| | - Helen Schultz
- Surgical Department, Odense University Hospital, J.B. Winsløws Vej 4, 5000, Odense C, Denmark; Institute of Clinical Research, University of Southern Denmark, Campusvej 55, 5230, Odense M, Denmark
| | - Tinne Dilles
- Department of Nursing and Midwifery Science, Centre For Research and Innovation in Care (CRIC), Nurse and Pharmaceutical Care (NuPhaC), Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1, 2610, Antwerp, Belgium
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12
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Perceived Participation in Decision-Making on Primary Surgery and Associated Factors Among Early Breast Cancer Patients: A Cross-sectional Study. Cancer Nurs 2023; 46:111-119. [PMID: 36795771 DOI: 10.1097/ncc.0000000000001071] [Citation(s) in RCA: 4] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
BACKGROUND Breast cancer patients wish to participate in the treatment decision-making, but the perceived participation was inconsistent with the willingness, leading to poor patient outcomes. OBJECTIVE The aims of this study were to explore the perceived participation in the primary surgery decision-making among Chinese patients with early-stage breast cancer (BCa) and to analyze the relationships of demographic and clinical factors, participation competence, self-efficacy, social support, and doctors' promotion of participation with the guidance of the capability, opportunity, motivation-behavior system (the COM-B system). METHODS Paper surveys were used to collect data from 218 participants. The participation competence, self-efficacy, social support, and the doctor facilitation of involvement were evaluated to measure factors related to perceived participation among early-stage BCa. RESULTS Perceived participation was low, and participants with a high level of participation competence, self-efficacy, and social support and who were employed and had a higher education level and higher family income perceived higher participation in primary surgery decision-making. CONCLUSIONS Perceived participation was low and may be facilitated by patients' internal and external factors during the decision-making process. Health professionals should be aware that patient participation in decision-making is a type of self-care health behavior, and targeted decision support interventions should be provided to facilitate participation. IMPLICATIONS FOR PRACTICE Patient-perceived participation may be evaluated from the perspective of self-care management behaviors among BCa patients. Nurse practitioners should emphasize their important roles in providing information, patient education, and psychological support to better contribute to the course of the treatment decision-making process for BCa patients who faced primary surgery.
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13
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Lu R, Zhao S, Wang X, Zhou J, Ou W, Jiang Y, Wen J, Hu L. Insights Into the Relationships Between Health Communication and Doctor-patient Relationship: A Scientometric Analysis Based on CiteSpace and Validation of Questionnaires. INQUIRY : A JOURNAL OF MEDICAL CARE ORGANIZATION, PROVISION AND FINANCING 2023; 60:469580231152071. [PMID: 36748743 PMCID: PMC9909062 DOI: 10.1177/00469580231152071] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Indexed: 02/08/2023]
Abstract
In order to understand the research status of the relationship between health communication and doctor-patient relationship, and to explore a new path of the impact of health communication on doctor-patient relationship, this paper adopted qualitative methods to quantize the literature over the past 10 years in the Web of Science database and carried out Co-Authorship Analysis, Co-Citation Analysis and Co-Occurrence Analysis based on CiteSpace. In addition, according to the results of bibliometric research, self-designed questionnaires were used to verify the result. A convenience sampling survey was conducted through the online "Questionnaire Star" platform (https://www.wjx.cn) on May 8, 2022, and a total of 254 questionnaires were collected. Interviewees were asked to use social software to acquire health knowledge. Participants come from 21 provinces, 4 municipalities, and 4 autonomous regions across the country, which is geographically representative. The results show that uncertainty of social media information and the particularity of the epidemic make the research on health communication and doctor-patient relationship in social media become a new hot spot. Social media health information quality (source credibility and content trust perception), information asymmetry perception, doctor-patient communication, doctor-patient consistency, doctor-patient trust, doctor-patient relationship may be the key variables for constructing theoretical models.
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Affiliation(s)
- Renjie Lu
- Changzhou Third People’s Hospital, Changzhou Medical Center, Nanjing Medical University, Jiangsu, China,Business School, ISCTE University Institute of Lisbon, Portugal,School of Health Management, Southern Medical University, Guangdong, China
| | - Shenyu Zhao
- Department of Neurology, Changzhou Third People’s Hospital, Changzhou Medical Center, Nanjing Medical University, Jiangsu, China
| | - Xiaoyu Wang
- Department of Reproduction, Changzhou Maternity and Child Health Care Hospital, Changzhou Medical Center, Nanjing Medical University, Jiangsu, China
| | - Jing Zhou
- Department of Reproduction, Changzhou Maternity and Child Health Care Hospital, Changzhou Medical Center, Nanjing Medical University, Jiangsu, China
| | - Weiyan Ou
- Business School, ISCTE University Institute of Lisbon, Portugal,School of Health Management, Southern Medical University, Guangdong, China
| | - Yongyi Jiang
- School of Health Management, Southern Medical University, Guangdong, China
| | - Juan Wen
- Nanjing Maternity and Child Health Care Institute, Women’s Hospital of Nanjing Medical University, Nanjing Maternity and Child Health Care Hospital, Jiangsu, China
| | - Lingmin Hu
- Department of Reproduction, Changzhou Maternity and Child Health Care Hospital, Changzhou Medical Center, Nanjing Medical University, Jiangsu, China,Lingmin Hu, Department of Reproduction, Changzhou Maternity and Child Health Care Hospital, Changzhou Medical Center, Nanjing Medical University, N0.16 Dingxiang Road, Zhonglou District, Changzhou, 213000, Jiangsu Province, China.
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14
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Ozdemir S, Chaudhry I, Tan SNG, Teo I, Malhotra C, Malhotra R, Finkelstein EA. Variation in Patient-Reported Decision-Making Roles in the Last Year of Life among Patients with Metastatic Cancer: A Longitudinal Study. Med Decis Making 2023; 43:203-213. [PMID: 36214321 DOI: 10.1177/0272989x221131305] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/11/2023]
Abstract
OBJECTIVE We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. METHODS We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients' quality of life and perceived quality of care. RESULTS The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached (P < 0.05). Compared with no patient involvement, joint decision making was associated with better emotional well-being (β [95% confidence interval] = 1.02 [0.24, 1.81]), better spiritual well-being (1.48 [0.01, 2.95]), lower psychological distress (-1.99 (-3.21, -0.77]), higher perceived quality of care coordination (5.04 [1.24, 8.85]), and physician communication (5.43 [1.27, 9.59]). Patient-led decision making was associated with better spiritual well-being (1.69 [0.24, 3.14]) and higher perceived quality of care coordination (6.87 [3.17, 10.58]) and physician communication (6.21 [2.15, 10.27]). CONCLUSION Joint and patient-led decision-making styles were reported by 61% of the patients and were associated with better quality of life and quality of care. A decrease in the level of patient involvement over time indicates reliance on family and physicians as death approached. HIGHLIGHTS Among patients with metastatic cancer, the level of patient involvement in decision making decreased slightly as death approached.Joint decision making of patients with their physicians and/or family caregivers and patient-led decision making were associated with better quality of life and perceived quality of care.Patients with metastatic cancer should be encouraged to be involved in decision making together with their physicians and/or family caregivers to potentially improve their end-of-life experience.
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Affiliation(s)
- Semra Ozdemir
- Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.,Saw Swee Hock School of Public Health, National University of Singapore, Singapore
| | - Isha Chaudhry
- Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.,Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
| | - Si Ning Germaine Tan
- Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.,Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
| | - Irene Teo
- Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.,National Cancer Centre Singapore, Singapore
| | - Chetna Malhotra
- Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
| | - Rahul Malhotra
- Signature Program in Health Services and Systems Research; Centre for Aging Research and Education, Duke-NUS Medical School, Singapore
| | - Eric Andrew Finkelstein
- Signature Program in Health Services and Systems Research; Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.,Saw Swee Hock School of Public Health, National University of Singapore, Singapore.,Duke Global Health Institute, Duke University, USA
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15
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Huang ER, Longcoy J, Shen J, Hsiao SC, Hsiao HY, Isaacs C, Sheppard VB, Wang JHY. Exploring Racial Differences in Treatment Decision-making in Chinese Immigrant and White American Breast Cancer Patients: the Role of Patient-Provider Communication. JOURNAL OF CANCER EDUCATION : THE OFFICIAL JOURNAL OF THE AMERICAN ASSOCIATION FOR CANCER EDUCATION 2023; 38:66-73. [PMID: 34392497 PMCID: PMC9165569 DOI: 10.1007/s13187-021-02079-y] [Citation(s) in RCA: 6] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 08/06/2021] [Indexed: 06/13/2023]
Abstract
Chinese immigrant cancer patients report suboptimal patient-provider communication, which increases the likelihood of decisional conflict and unsatisfactory treatment decision-making (TDM) outcomes (e.g., low satisfaction and perceived control over cancer care). This cross-sectional study explored whether (1) communication and decisional conflict factors associated with TDM outcomes differed between Chinese immigrant and non-Hispanic White breast cancer patients, and (2) the association between patient-provider communication and the outcomes were mediated by TDM factors, regardless of race. Ninety-eight breast cancer patients, diagnosed at stage I-III participated in cross-sectional survey interviews. TDM outcomes and possible predictors of the outcomes (e.g., patient-provider communication, decisional conflict, preference for who makes the treatment decision) were assessed. Linear regression and mediational testing were performed to examine associations among variables of interest. Of the 98, 85 were included for analysis. Chinese patients with limited English proficiency (n = 37) had poorer patient-provider communication, higher decisional conflict, and preferred providers to make decisions than non-Hispanic White patients (n = 48; all p < .05). They also had lower satisfaction with their TDM process after controlling for predictors (e.g., patient-provider communication) (p < .001). There were no significant racial differences in perceived control, controlling for covariates. Regardless of race, patients who reported quality patient-provider communication reported less decisional conflict. These patients also reported increased satisfaction and perceived control. The disparities Chinese immigrant cancer patients experienced in the TDM process may be related to their cultural communication style with providers. Facilitating Chinese patients' communication and partnership with providers may reduce decisional conflicts and increase their TDM outcomes.
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Affiliation(s)
- Ellen R Huang
- Department of Oncology, Lombardi Comprehensive Cancer Center, Cancer Prevention and Control Program, Georgetown University Medical Center, Washington, DC, USA
| | - Joshua Longcoy
- Department of Oncology, Lombardi Comprehensive Cancer Center, Cancer Prevention and Control Program, Georgetown University Medical Center, Washington, DC, USA
- Department of Biostatistics, Epidemiology, and Environmental Health Sciences, Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GA, USA
| | | | - Suh-Chen Hsiao
- University of Southern California Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, CA, USA
| | - Hsin-Yi Hsiao
- Department of Social Work, Tzu Chi University, Hualien, Taiwan
| | - Claudine Isaacs
- Department of Oncology, Fisher Center for Hereditary Cancer and Clinical Genomics Research, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA
| | - Vanessa B Sheppard
- Department of Health Behavior and Policy, Massey Cancer Center Office of Health Equity Disparities Research, Virginia Commonwealth University School of Medicine, Richmond, VA, USA
| | - Judy Huei-Yu Wang
- Department of Oncology, Lombardi Comprehensive Cancer Center, Cancer Prevention and Control Program, Georgetown University Medical Center, Washington, DC, USA.
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16
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Best-Worst Scaling Survey of Inpatients' Preferences in Medical Decision-Making Participation in China. Healthcare (Basel) 2023; 11:healthcare11030323. [PMID: 36766897 PMCID: PMC9914008 DOI: 10.3390/healthcare11030323] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/15/2022] [Revised: 01/06/2023] [Accepted: 01/19/2023] [Indexed: 01/24/2023] Open
Abstract
This study assesses inpatients' preferences for participating in medical decision-making and determines the factors' rankings in order of importance and whether they vary for respondents with different characteristics. Case 1 best-worst scaling (BWS) was used for the study design. Thirteen attributes influencing inpatient medical decision-making participation were identified based on a literature review and interview results. A balanced incomplete block design was used to form choice sets for the BWS questionnaire for a cross-sectional study examining inpatients' preferences for participating in medical decision-making. Based on results from 814 inpatient participants, the three most important factors influencing inpatients' medical decision-making participation were inpatients' trust in physicians, physicians' professional expertise, and physicians' attitudes. The mixed logit model results reflect the significant heterogeneity in respondents' preferences for shared decision-making. To facilitate resource allocation, improve the physician-patient relationship, and encourage patient decision-making participation more actively and effectively, decision-makers should emphasize patients' trust, enhance physicians' ability to diagnose and treat diseases, and improve their attitudes toward providing care and communication from the perspectives of patients, physicians, and the social environment. Further research is needed on the heterogeneity of patients' preferences for participating in medical decision-making and how to improve patient participation.
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17
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Elkefi S, Asan O. The Impact of Patient-Centered Care on Cancer Patients' QOC, Self-Efficacy, and Trust Towards Doctors: Analysis of a National Survey. J Patient Exp 2023; 10:23743735231151533. [PMID: 36698621 PMCID: PMC9869234 DOI: 10.1177/23743735231151533] [Citation(s) in RCA: 23] [Impact Index Per Article: 11.5] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/19/2023] Open
Abstract
Patient-centered approaches impact cancer patients' perceptions and outcomes in different ways. This study explores the impact of patient-centered care practices on cancer patients' quality-of-care (QOC), self-efficacy, and trust in their doctors. We utilized cross-sectional national survey data from the National Cancer Institute collected between 2017 and 2020. All estimates were weighted using the jackknife method. We used multivariable logistic regression to test our hypotheses adjusted for the demographics of the 1932 cancer patients that responded to the survey. Findings indicate that patient-centered communication resulted in better QOC, self-efficacy, and trust in doctors. In addition, engagement in their care improved patients' trust in cancer-related information received from doctors. QOC and patients' trust in doctors were significantly improved with the patients' understanding of the next steps, addressing feelings, clear explanation of the problems, spending enough time with the clinicians, addressing uncertainty, and involvement in decisions. Patients who were given a chance to ask questions were significantly more likely to trust their doctors. Technology use did not impact any of these interactions. Patient-centered strategies should consider the needs of the patients in the cancer settings to improve overall outcomes. Organizations should also build strategies that are goal-oriented and centered around the patients' needs, as standard strategies cannot induce the wanted results.
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Affiliation(s)
- Safa Elkefi
- School of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ, USA
| | - Onur Asan
- School of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ, USA
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18
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Jactel SN, Olson JM, Wolin KY, Brown J, Pathipati MP, Jagiella VJ, Korzenik JR. Efficacy of a Digital Personalized Elimination Diet for the Self-Management of Irritable Bowel Syndrome and Comorbid Irritable Bowel Syndrome and Inflammatory Bowel Disease. Clin Transl Gastroenterol 2023; 14:e00545. [PMID: 36322404 PMCID: PMC9875997 DOI: 10.14309/ctg.0000000000000545] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/14/2022] [Accepted: 10/03/2022] [Indexed: 11/07/2022] Open
Abstract
INTRODUCTION Most patients with irritable bowel syndrome (IBS) and dual-diagnosis IBS and inflammatory bowel disease (IBD) report that symptoms originate from or are exacerbated by trigger foods. Despite patient interest and need, there is no consensus on what diet is optimal. Popular diets have notable limitations including cost, length, implementation complexity, and lack of personalization. METHODS This pilot study evaluated the feasibility, desirability, and effect on gastrointestinal symptoms of a digitally delivered personalized elimination diet for patients with IBS and comorbid IBS/IBD, powered by machine learning. Participants were recruited online and were provided access to a digital personalized nutrition tool for 9 weeks (N = 37; IBS only = 16, Crohn's disease and IBS = 9, and ulcerative colitis and IBS = 12). RESULTS Significant symptom improvement was seen for 81% of participants at study midpoint and persisted for 70% at end point, measured by the relevant symptom severity score (IBS symptom severity score, Patient Simple Clinical Colitis Activity Index, or Mobile Health Index for Crohn's disease). Clinically significant symptom improvement was observed in 78% of participants at midpoint and 62% at end point. Twenty-five participants (67.6%) achieved total symptomatic resolution by the end of study. Patient-reported quality of life improved for 89% of participants. Ninety-five percentage daily engagement, 95% retention, 89% adherence and 92% satisfaction with the program were reported. DISCUSSION Dietary elimination can improve symptoms and quality of life in patients with IBS and comorbid IBS/IBD. Digital technology can personalize dietary interventions and improve adherence. Randomized controlled trials are warranted.
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Affiliation(s)
- Samuel N. Jactel
- Ayble Health, Boston, Massachusetts, USA
- Kellogg School of Management, Northwestern University, Evanston, Illinois, USA
| | - Joseph M. Olson
- Department of Psychology, Northwestern University, Evanston, Illinois, USA
| | - Kathleen Y. Wolin
- Kellogg School of Management, Northwestern University, Evanston, Illinois, USA
| | - Jordan Brown
- Department of Nutrition, University of Illinois at Chicago, Chicago, Illinois, USA
| | - Mythili P. Pathipati
- Division of Gastroenterology, Massachusetts General Hospital, Boston, Massachusetts, USA
- Harvard Medical School, Boston, Massachusetts, USA
| | | | - Joshua R. Korzenik
- Harvard Medical School, Boston, Massachusetts, USA
- Division of Gastroenterology, Hepatology and Endoscopy, Brigham and Women's Hospital, Boston, Massachusetts, USA
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Zhou X, Yang Y, Li C, Gu S, Hou W, Lai X, Zhai L, Zhu Y. What information can we gain from the quality appraisal of guidelines with physical activity recommendations for cancer patients?A systematic review using the AGREE II and AGREE-REX tools. Support Care Cancer 2023; 31:97. [PMID: 36598576 PMCID: PMC9811039 DOI: 10.1007/s00520-022-07567-5] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/05/2022] [Accepted: 12/28/2022] [Indexed: 01/05/2023]
Abstract
PURPOSE There has been growing amount of evidence supporting the benefits of physical activity (PA) on oncological patients' cancer-related health outcomes. Although guidelines on cancer rehabilitation are widely available, the varying quality and practical applicability limited the clinical application of PA recommendations. To assist the future development of guidelines, in this systematic review, we evaluated the quality and applicability of current cancer rehabilitation guidelines with PA recommendations and synthesized PA recommendations for the oncological population. METHODS A systematic search was conducted in PubMed, CINAHL, PEDro, EMBASE, and guideline repositories to identify guidelines with PA recommendations for cancer patients from 1 May 2016 to 1 June 2022. The quality of included guidelines was appraised using the tools "Appraisal of Guidelines for Research and Evaluation II" (AGREE II) and AGREE-REX (Recommendation Excellence). PA recommendations were synthesized from the guidelines. RESULTS Sixteen guidelines were extracted. The AGREE II domain "clarity of presentation" obtained the highest score, while "applicability" received the lowest, ranging from 33.33% to 98.58%. The AGREE-REX domains "values and preferences" and "implementability" generally scored lower and ranged from 45.83% to 74.17% and 55% to 88.33%, respectively. Eight high-quality guidelines were identified, and the included PA recommendations were extracted. CONCLUSION There were some disparities in the quality of the included guidelines. Methodological weaknesses were commonly observed in domains "applicability," "values and preferences," and "implementability"; particular attention should be given to these domains when developing future guidelines. Furthermore, this analysis indicated that more rigorous, high-quality studies are needed to generate evidence for supporting PA recommendations and provide guidance on research gaps in the field of cancer rehabilitation.
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Affiliation(s)
- Xue Zhou
- The Fifth Affiliated Hospital of Zhengzhou University, Zhengzhou, 450000 Henan China
- Academy of Medical Sciences, Zhengzhou University, Zhengzhou, 450000 Henan China
| | - Yujie Yang
- University of Health and Rehabilitation Sciences, Qingdao, 266000 Shandong China
| | - Conghui Li
- The Fifth Affiliated Hospital of Zhengzhou University, Zhengzhou, 450000 Henan China
- Academy of Medical Sciences, Zhengzhou University, Zhengzhou, 450000 Henan China
| | - Shanshan Gu
- Department of Physical Therapy, University of Toronto, Toronto, Ontario Canada
| | - Weiqian Hou
- The Fifth Affiliated Hospital of Zhengzhou University, Zhengzhou, 450000 Henan China
- Academy of Medical Sciences, Zhengzhou University, Zhengzhou, 450000 Henan China
| | - Xigui Lai
- Department of Kinesiology, Shanghai University of Sport, Shanghai, 200438 China
| | - Liwen Zhai
- The Fifth Affiliated Hospital of Zhengzhou University, Zhengzhou, 450000 Henan China
- Academy of Medical Sciences, Zhengzhou University, Zhengzhou, 450000 Henan China
| | - Yi Zhu
- The Fifth Affiliated Hospital of Zhengzhou University, Zhengzhou, 450000 Henan China
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20
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Gray KD, Nobel TB, Hsu M, Tan KS, Chudgar N, Yan S, Rusch VW, Jones DR, Rocco G, Molena D, Isbell JM. Improved Preoperative Risk Assessment Tools Are Needed to Guide Informed Decision Making before Esophagectomy. Ann Surg 2023; 277:116-120. [PMID: 33351463 PMCID: PMC8211904 DOI: 10.1097/sla.0000000000004715] [Citation(s) in RCA: 8] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
OBJECTIVE We sought to evaluate the performance of 2 commonly used prediction models for postoperative morbidity in patients undergoing open and minimally invasive esophagectomy. SUMMARY BACKGROUND DATA Patients undergoing esophagectomy have a high risk of postoperative complications. Accurate risk assessment in this cohort is important for informed decision-making. METHODS We identified patients who underwent esophagectomy between January 2016 and June 2018 from our prospectively maintained database. Predicted morbidity was calculated using the American College of Surgeons National Surgical Quality Improvement Program Surgical Risk Calculator (SRC) and a 5-factor National Surgical Quality Improvement Programderived frailty index. Performance was evaluated using concordance index (C-index) and calibration curves. RESULTS In total, 240 consecutive patients were included for analysis. Most patients (85%) underwent Ivor Lewis esophagectomy. The observed overall complication rate was 39%; the observed serious complication rate was 33%.The SRC did not identify risk of complications in the entire cohort (C-index, 0.553), patients undergoing open esophagectomy (C-index, 0.569), or patients undergoing minimally invasive esophagectomy (C-index, 0.542); calibration curves showed general underestimation. Discrimination of the SRC was lowest for reoperation (C-index, 0.533) and highest for discharge to a facility other than home (C-index, 0.728). Similarly, the frailty index had C-index of 0.513 for discriminating any complication, 0.523 for serious complication, and 0.559 for readmission. CONCLUSIONS SRC and frailty index did not adequately predict complications after esophagectomy. Procedure-specific risk-assessment tools are needed to guide shared patient-physician decision-making in this high-risk population.
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Affiliation(s)
- Katherine D. Gray
- Department of Surgery, New York Presbyterian Hospital–Weill Cornell Medicine, New York, NY
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Tamar B. Nobel
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Meier Hsu
- Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Kay See Tan
- Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Neel Chudgar
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Shi Yan
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Valerie W. Rusch
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - David R. Jones
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Gaetano Rocco
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Daniela Molena
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
| | - James M. Isbell
- Thoracic Service, Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY
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21
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Zheng H, Yang L, Hu J, Yang Y. Frequency and Influencing Factors of Shared Decision Making Among Breast Cancer Patients Receiving Surgery: A Systematic Review and Meta-Analysis. Clin Breast Cancer 2023; 23:e20-e31. [PMID: 36357267 DOI: 10.1016/j.clbc.2022.10.007] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/27/2022] [Accepted: 10/05/2022] [Indexed: 12/27/2022]
Abstract
Due to the diversified and high sensitivity of breast cancer surgical treatment, various decision making styles show different functions in making trade-offs and sharing information. Shared decision making is the best practice paradigm to promote health outcomes. This study aimed to determine the overall frequency of shared decision making and explore influencing factors during the surgical decision-making process from breast cancer patients' perspectives. We searched 8 databases for studies about breast cancer patients' surgical decisional control preferences and shared decision making preference. Two researchers screened the literature, extracted the data, and evaluated the literature quality. Meta-analysis of the frequency of preferred and actual shared decision making and decision congruence was performed. Due to the limited studies of influencing factors, descriptive analysis was used. Fourteen original studies were included in this study. We found the overall pooled frequency of the preferred shared decision making of 48.1% (95%CI 33.5%, 62.6%) and the actual shared decision making of 38.1% (95%CI 33.9%, 42.2%). Moreover, the pooled frequency of the decision congruence between preferred and actual decision styles was 61.7% (95%CI 54.6%, 68.8%). The descriptive analysis findings indicated that the influencing factors of shared decision making included individual factors, surgeon-patient communication factors, and health setting factors. There was a gap between the preferred and actual decision styles in the surgical context. Therefore, health care providers should identify potential shared decision making barriers and facilitators, and advocate the clinical shared decision making model to embed shared decision making into routine practice.
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Affiliation(s)
- Hongying Zheng
- School of Nursing, Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Linning Yang
- Reproductive Medicine Center, Renji Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Jiale Hu
- Department of Nurse Anesthesia, Virginia Commonwealth University, Richmond, VA, USA.
| | - Yan Yang
- School of Nursing, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
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22
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Damen DJ, Schoonman GG, Maat B, Habibović M, Krahmer E, Pauws S. Patients Managing Their Medical Data in Personal Electronic Health Records: Scoping Review. J Med Internet Res 2022; 24:e37783. [PMID: 36574275 PMCID: PMC9832357 DOI: 10.2196/37783] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/07/2022] [Accepted: 07/31/2022] [Indexed: 01/18/2023] Open
Abstract
BACKGROUND Personal electronic health records (PEHRs) allow patients to view, generate, and manage their personal and medical data that are relevant across illness episodes, such as their medications, allergies, immunizations, and their medical, social, and family health history. Thus, patients can actively participate in the management of their health care by ensuring that their health care providers have an updated and accurate overview of the patients' medical records. However, the uptake of PEHRs remains low, especially in terms of patients entering and managing their personal and medical data in their PEHR. OBJECTIVE This scoping review aimed to explore the barriers and facilitators that patients face when deciding to review, enter, update, or modify their personal and medical data in their PEHR. This review also explores the extent to which patient-generated and -managed data affect the quality and safety of care, patient engagement, patient satisfaction, and patients' health and health care services. METHODS We searched the MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library, Web of Science, and Google Scholar web-based databases, as well as reference lists of all primary and review articles using a predefined search query. RESULTS Of the 182 eligible papers, 37 (20%) provided sufficient information about patients' data management activities. The results showed that patients tend to use their PEHRs passively rather than actively. Patients refrain from generating and managing their medical data in a PEHR, especially when these data are complex and sensitive. The reasons for patients' passive data management behavior were related to their concerns about the validity, applicability, and confidentiality of patient-generated data. Our synthesis also showed that patient-generated and -managed health data ensures that the medical record is complete and up to date and is positively associated with patient engagement and patient satisfaction. CONCLUSIONS The findings of this study suggest recommendations for implementing design features within the PEHR and the construal of a dedicated policy to inform both clinical staff and patients about the added value of patient-generated data. Moreover, clinicians should be involved as important ambassadors in informing, reminding, and encouraging patients to manage the data in their PEHR.
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Affiliation(s)
- Debby J Damen
- Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, Netherlands
| | - Guus G Schoonman
- Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, Netherlands
- Department of Neurology, Elisabeth-TweeSteden Hospital, Tilburg, Netherlands
| | - Barbara Maat
- Department of Pharmacy, Elisabeth-TweeSteden Hospital, Tilburg, Netherlands
| | - Mirela Habibović
- Department of Medical and Clinical Psychology, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, Netherlands
| | - Emiel Krahmer
- Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, Netherlands
| | - Steffen Pauws
- Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, Netherlands
- Department of Remote Patient Management & Connected Care, Philips Research, Eindhoven, Netherlands
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23
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Gregory EF, Maddox AI, Levine LD, Fiks AG, Lorch SA, Resnicow K. Motivational interviewing to promote interconception health: A scoping review of evidence from clinical trials. PATIENT EDUCATION AND COUNSELING 2022; 105:3204-3212. [PMID: 35870992 PMCID: PMC9529865 DOI: 10.1016/j.pec.2022.07.009] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/07/2022] [Revised: 07/07/2022] [Accepted: 07/15/2022] [Indexed: 06/12/2023]
Abstract
BACKGROUND Promoting interconception health can improve birth outcomes and long-term women's health. Motivational Interviewing (MI) is an evidence-based behavior change strategy that can address interconception health behaviors and health care engagement. OBJECTIVE This scoping review assessed the evidence for using MI to promote interconception health and assessed features of successful MI interventions. METHODS We searched PubMed, CHINAL, and Cochrane databases for clinical trials that involved an MI intervention and at least one comparison group published by 8/31/2021. Interventions occurred during pregnancy or within three months postpartum and outcomes were measured between birth and one year postpartum. We abstracted data on trial characteristics including outcome, population, interventionist training, MI fidelity monitoring, intervention dose, and comparison condition. We examined whether trials that demonstrated statistically significant improvement in outcomes had common features. RESULTS There were 37 included studies. Interventions addressed breastfeeding, teen contraception, tobacco, alcohol, or substance use, vaccine acceptance, nutrition, physical activity, and depression. No trials addressed more than one topic. Nineteen studies demonstrated improved outcomes. Interventions during the perinatal or postnatal periods were more likely to demonstrate improved interconception outcomes than interventions in the prenatal period. No other trial characteristics were consistently associated with demonstrating improved outcomes. DISCUSSION MI has been applied to a variety of interconception health behaviors, with some promising results, particularly for interventions in the perinatal or postpartum period. Outcomes were not clearly attributable to any other differences in intervention or study design. Further exploring context or implementation may help maximize the potential of MI in interconception health promotion. PRACTICAL VALUE MI may be implemented across a range of clinical settings, patient groups, and time points around pregnancy. Interventions on health topics relevant to the interconception period should incorporate perinatal or postpartum components.
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Affiliation(s)
- Emily F Gregory
- Division of General Pediatrics, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, USA; Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia Research Institute, Philadelphia, USA.
| | - Adya I Maddox
- Division of General Pediatrics, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, USA; Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia Research Institute, Philadelphia, USA
| | - Lisa D Levine
- Maternal and Child Health Research Center, Department of Obstetrics and Gynecology, University of Pennsylvania, Perelman School of Medicine, Philadelphia, USA
| | - Alexander G Fiks
- Division of General Pediatrics, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, USA; Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia Research Institute, Philadelphia, USA
| | - Scott A Lorch
- Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia Research Institute, Philadelphia, USA; Division of Neonatology, Department of Pediatrics, Children's Hospital of Philadelphia. Philadelphia, USA
| | - Kenneth Resnicow
- Department of Health Behavior and Health Education, School of Public Health, University of Michigan, Ann Arbor, USA
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24
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Batioja K, Peña A, Smith C, Minley K, Wise A, Shepard S, Heigle B, Ottwell R, Hartwell M, Vassar M. Evaluating The Reporting of Patient-Reported Outcomes in Surgical Management of Stress Urinary Incontinence in Women: An Analysis of Randomized Controlled Trials. Womens Health Issues 2022; 33:312-319. [DOI: 10.1016/j.whi.2022.10.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2022] [Revised: 10/15/2022] [Accepted: 10/21/2022] [Indexed: 11/26/2022]
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25
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Lee PY, Cheong AT, Ghazali SS, Rashid AA, Ong SC, Ong SY, Alip A, Sylvia M, Chen MF, Taib NA, Jaganathan M, Ng CJ, Teo SH. Barriers of and strategies for shared decision-making implementation in the care of metastatic breast cancer: A qualitative study among patients and healthcare professionals in an Asian country. Health Expect 2022; 25:2837-2850. [PMID: 36098241 DOI: 10.1111/hex.13590] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/30/2021] [Revised: 06/16/2022] [Accepted: 08/05/2022] [Indexed: 11/30/2022] Open
Abstract
BACKGROUND Shared decision-making has been shown to improve the quality of life in metastatic breast cancer patients in high-literacy and high-resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision-making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision-making is at the forefront. This paper aims to identify (1) barriers to practising shared decision-making faced by healthcare professionals and patients and (2) strategies for implementing shared decision-making in the context of metastatic breast cancer management in Malaysia. METHODS We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi-structured in-depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data. RESULTS Five main themes emerged from the study: healthcare provider-patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision-making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues. CONCLUSION This study found that practising shared decision-making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision-making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider-patient barriers identified in this study. PATIENT OR PUBLIC CONTRIBUTION Patients were involved in the study design, recruitment and analysis.
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Affiliation(s)
- Ping Yein Lee
- UMeHealth Unit, Faculty of Medicine, University of Malaya (UM), Kuala Lumpur, Malaysia.,Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia (UPM), Kuala Lumpur, Malaysia
| | - Ai Theng Cheong
- Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia (UPM), Kuala Lumpur, Malaysia
| | - Sazlina Shariff Ghazali
- Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia (UPM), Kuala Lumpur, Malaysia
| | - Aneesa Abdul Rashid
- Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia (UPM), Kuala Lumpur, Malaysia
| | - Siu Ching Ong
- Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia (UPM), Kuala Lumpur, Malaysia.,Cancer Research Malaysia (CRMY), Subang Jaya, Selangor, Malaysia
| | - Soo Ying Ong
- Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia (UPM), Kuala Lumpur, Malaysia.,Cancer Research Malaysia (CRMY), Subang Jaya, Selangor, Malaysia
| | - Adlinda Alip
- Department of Clinical Oncology, Faculty of Medicine, University of Malaya (UM), Kuala Lumpur, Malaysia
| | - McCarthy Sylvia
- Clinical Service Department, Hospis Malaysia, Kuala Lumpur, Malaysia
| | - May Feng Chen
- Department of Clinical Oncology, Faculty of Medicine, University of Malaya (UM), Kuala Lumpur, Malaysia
| | - Nur Aishah Taib
- Department of Surgery, Universiti Malaya Cancer Research Institute, Faculty of Medicine, University of Malaya (UM), Kuala Lumpur, Malaysia
| | | | - Chirk Jenn Ng
- Department of Primary Care Medicine, Faculty of Medicine, University of Malaya (UM), Kuala Lumpur, Malaysia.,Health Services & Systems Research, Duke NUS Medical School, Singapore, Singapore.,SingHealth Polyclinics, Singapore, Singapore
| | - Soo-Hwang Teo
- Cancer Research Malaysia (CRMY), Subang Jaya, Selangor, Malaysia
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26
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Resnicow K, Catley D, Goggin K, Hawley S, Williams GC. Shared Decision Making in Health Care: Theoretical Perspectives for Why It Works and For Whom. Med Decis Making 2022; 42:755-764. [PMID: 34784805 PMCID: PMC9108118 DOI: 10.1177/0272989x211058068] [Citation(s) in RCA: 34] [Impact Index Per Article: 11.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/02/2022]
Abstract
Applying both theoretical perspectives and empirical evidence, we address 2 key questions regarding shared decision making (SDM): 1) When should SDM be more patient driven, and when should it be more provider driven? and 2) Should health care providers match their SDM style/strategy to patient needs and preferences? Self-determination theory, for example, posits a distinction between autonomy and independence. A patient may autonomously seek their health care provider's input and guidance, perhaps due to low perceived competence, low coping resources, or high emotional arousal. Given their need state, they may autonomously require nonindependence. In this case, it may be more patient centered and need supportive to provide more provider-driven care. We discuss how other patient characteristics such as personality attributes, motivational state, and the course of illness and other parameters such as time available for an encounter may inform optimal provider decision-making style and strategy. We conclude that for some types of patients and clinical circumstances, a more provider-driven approach to decision making may be more practical, ethical, and efficacious. Thus, while all decision making should be patient centered (i.e., it should consider patient needs and preferences), it does not always have to be patient driven. We propose a flexible model of SDM whereby practitioners are encouraged to tailor their decision making behaviors to patient needs, preferences, and other attributes. Studies are needed to test whether matching decision-making behavior based on patient states and traits (i.e., achieving concordance) is more effective than simply providing all patients with the same type of decision making, which could be tested using matching/mismatching designs.
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Affiliation(s)
- Ken Resnicow
- Ken Resnicow, Department of Health
Behavior and Health Education, University of Michigan, School of
Public Health, 109 Observatory Street, Room 3867 SPH I, Ann Arbor, MI
48109-2029, USA; ()
| | - Delwyn Catley
- Center for Children’s Healthy
Lifestyles & Nutrition, Children’s Mercy Kansas City, Kansas
City, MO, USA,School of Medicine, University of
Missouri–Kansas City, Kansas City, MO, USA
| | - Kathy Goggin
- School of Medicine, University of
Missouri–Kansas City, Kansas City, MO, USA,Division of Health Services and
Outcomes Research, Children’s Mercy Kansas City, Kansas City,
MO, USA
| | - Sarah Hawley
- Department of Medicine, University of
Michigan Rogel Cancer Center, Ann Arbor, MI, USA,University of Michigan Rogel Cancer
Center, Ann Arbor, MI, USA
| | - Geoffrey C. Williams
- Collaborative Science and Innovations
Billings Clinic, Billings Montana,Emeritus Department of Medicine and
Center for Community Health & Prevention, University of
Rochester, Rochester, New York
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27
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Shepherd V. (Re)Conceptualising 'good' proxy decision-making for research: the implications for proxy consent decision quality. BMC Med Ethics 2022; 23:75. [PMID: 35850682 PMCID: PMC9294776 DOI: 10.1186/s12910-022-00809-5] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/29/2021] [Accepted: 07/06/2022] [Indexed: 11/18/2022] Open
Abstract
People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes 'good' proxy decision-making for research has remained unexplored. Interventions are needed to improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of 'good' proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients' values and preferences.
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Affiliation(s)
- Victoria Shepherd
- Centre for Trials Research, Cardiff University, 4th Floor Neuadd Meirionnydd, Heath Park, Cardiff, CF14 0GB, UK.
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28
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Hamad A, Crossnohere N, Ejaz A, Tsung A, Pawlik TM, Sarna A, Santry H, Wills C, Cloyd JM. Patient Preferences for Neoadjuvant Therapy in Pancreatic Ductal Adenocarcinoma. Pancreas 2022; 51:657-662. [PMID: 36099500 DOI: 10.1097/mpa.0000000000002083] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
OBJECTIVES Physicians are increasingly recommending neoadjuvant therapy (NT) before surgery for pancreatic ductal adenocarcinoma (PDAC). However, patient preferences for and opinions regarding NT are poorly understood. METHODS Survivors and caregivers from a national PDAC patient advocacy organization completed an online survey assessing preferences for NT versus surgery first (SF) and factors influencing their decision making. RESULTS Among 54 participants, 74.1% had a personal history of PDAC. While most patients preferred SF for resectable disease, NT was the preferred treatment approach for borderline resectable, locally advanced, and resectable cancers with high carbohydrate antigen 19-9. The most important factor influencing patient decision making regarding NT was its impact on overall survival while the least important was published national guidelines. The most preferred rationale for NT was ability to downstage to surgical resection and early treatment of micrometastatic disease. CONCLUSIONS Among a national cohort of PDAC survivors and caregivers, the majority preferred SF for resectable PDAC, whereas NT was preferred when the resectability of a tumor was in question. The impact of NT on quantity and quality of life, as well as the likelihood of achieving surgical resection, was most highly valued by participants.
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Affiliation(s)
- Ahmad Hamad
- From the Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
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29
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Abdelhadi OA, Pollock BH, Joseph J, Keegan THM. Shared Decision-Making Among Adolescent and Young Adult Cancer Survivors and Noncancer Adults: Associated Medical Expenditures and Health Care Utilization. J Adolesc Young Adult Oncol 2022; 12:168-176. [PMID: 35900289 DOI: 10.1089/jayao.2021.0207] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/13/2022] Open
Abstract
Purpose: Engagement of patients in their care can lead to better health outcomes, especially for adolescent and young adult (AYA) cancer survivors who experience mental and physical illnesses more often than noncancer adults. We examined how patient engagement in care influences health care expenses and use. Methods: AYA cancer survivors (n = 1162) and a comparison group of matched adults with no history of cancer (n = 2954) were identified from the 2011 to 2016 Medical Expenditure Panel Survey (MEPS) data. Medical expenditures and health care utilization associated with shared decision-making (SDM) measured by a self-administered questionnaire adapted from the Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CAHPS-CG) survey were evaluated using multivariable regression models. Results: AYA cancer survivors were more likely to report poor SDM compared with adults with no history of cancer (odds ratio = 1.31, 95% confidence interval [CI]): 1.06 to 1.62). AYA cancer survivors with poor SDM were more likely to report poor mental and physical health compared with AYAs with good SDM. AYA cancer survivors with poor SDM had $3037 (CI: $110 to $7032) in additional annual medical expenses and 4.86 (CI: 2.00 to 8.52) in additional office visits compared with AYA cancer survivors with optimal SDM, even after adjusting for chronic conditions and psychological distress. Conclusion: Our results highlight the substantial economic burden associated with poor SDM in AYA cancer survivors. Our research suggests that interventions to improve SDM in AYA cancer survivors may contribute to patients' positive perception of their health and result in AYAs seeking fewer medical services resulting in lower medical expenses.
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Affiliation(s)
- Ola A Abdelhadi
- Graduate Group of Epidemiology, University of California, Davis, Davis, California, USA
| | - Brad H Pollock
- Graduate Group of Epidemiology, University of California, Davis, Davis, California, USA.,Department of Public Health Sciences, University of California, Davis, Sacramento, California, USA
| | - Jill Joseph
- Betty Irene Moore School of Nursing, University of California, Davis, Sacramento, California, USA
| | - Theresa H M Keegan
- Graduate Group of Epidemiology, University of California, Davis, Davis, California, USA.,Department of Public Health Sciences, University of California, Davis, Sacramento, California, USA.,Center for Oncology Hematology Outcomes Research and Training (COHORT) and Division of Hematology and Oncology, University of California Davis School of Medicine, Sacramento, California, USA
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30
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Stevens L, Brown ZJ, Zeh R, Monsour C, Wells-Di Gregorio S, Santry H, Ejaz AM, Pawlik TM, Cloyd JM. Characterizing the patient experience during neoadjuvant therapy for pancreatic ductal adenocarcinoma: A qualitative study. World J Gastrointest Oncol 2022; 14:1175-1186. [PMID: 35949220 PMCID: PMC9244990 DOI: 10.4251/wjgo.v14.i6.1175] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/14/2022] [Revised: 04/01/2022] [Accepted: 05/17/2022] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Neoadjuvant therapy (NT) has increasingly been utilized for patients with localized pancreatic ductal adenocarcinoma (PDAC). It is the recommended approach for borderline resectable (BR) and locally advanced (LA) cancers and an increasingly utilized option for potentially resectable (PR) disease. Despite its increased use, little research has focused on patient-centered metrics among patients undergoing NT, including patient experiences, preferences, and recommendations. A better understanding of all aspects of the patient experience during NT may identify opportunities to design interventions aimed at improving quality of life; it may also facilitate the completion of NT and receipt of surgery, ultimately optimizing long-term outcomes. AIM To understand the experience of patients initiating and receiving NT to identify opportunities to improve neoadjuvant cancer care delivery. METHODS Semi-structured interviews of patients with localized PDAC during NT were conducted to explore their experience initiating and receiving NT. Interviews took place between August 2020 and October 2021. Due to the descriptive nature of the research, questions were open ended. Interviews were conducted over the phone, audio recorded and then transcribed. All interviews were coded by two independent researchers using NVivo 12, iteratively identifying themes until thematic saturation was achieved. An integrative approach to qualitative analysis was used, utilizing both inductive and deductive methods. RESULTS A total of 12 patients with localized PDAC were interviewed. Patients with BR (n = 7), PR (n = 2), and LA (n = 3) cancers participated in the study. All patients indicated that choosing NT was the doctor's recommendation, while most reported not being familiar with the concept of NT (n = 11) and that NT was presented as the only option (n = 8). Five themes describing the patient experience emerged: physical symptoms, emotional symptoms, coping mechanisms, access to care, and life factors. The most commonly cited recommendation for improving the experience of NT was improved education before and during NT (n = 7). Patients highlighted the need for more information on the rationale behind choosing NT prior to surgery, the anticipated surgery and its likelihood of surgery occurring after NT, as well as general information prior to starting NT treatment. The need for seeing different members of the healthcare team, including ancillary services was also frequently cited as a recommendation for improving the experience of NT (n = 5). CONCLUSION This study provides a framework to allow for a better understanding of the PDAC patient experience during NT and highlights opportunities to improve quality and quantity of life outcomes.
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Affiliation(s)
- Lena Stevens
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Zachary J Brown
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Ryan Zeh
- Department of General Surgery, University of Pittsburgh Medical Center, Pittsburgh, PA 15213, United States
| | - Christina Monsour
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Sharla Wells-Di Gregorio
- Department of Psychiatry, Center for Palliative Care, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Heena Santry
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Aslam M Ejaz
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Timothy Michael Pawlik
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
| | - Jordan M Cloyd
- Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH 43210, United States
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31
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Michaels JA. Value assessment frameworks: who is valuing the care in healthcare? JOURNAL OF MEDICAL ETHICS 2022; 48:419-426. [PMID: 33687915 DOI: 10.1136/medethics-2020-106503] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/25/2020] [Revised: 10/27/2020] [Accepted: 02/08/2021] [Indexed: 06/12/2023]
Abstract
Many healthcare agencies are producing evidence-based guidance and policy that may determine the availability of particular healthcare products and procedures, effectively rationing aspects of healthcare. They claim legitimacy for their decisions through reference to evidence-based scientific method and the implementation of just decision-making procedures, often citing the criteria of 'accountability for reasonableness'; publicity, relevance, challenge and revision, and regulation. Central to most decision methods are estimates of gains in quality-adjusted life-years (QALY), a measure that combines the length and quality of survival. However, all agree that the QALY alone is not a sufficient measure of all relevant aspects of potential healthcare benefits, and a number of value assessment frameworks have been suggested. I argue that the practical implementation of these procedures has the potential to lead to a distorted assessment of value. Undue weight may be ascribed to certain attributes, particularly those that favour commercial or political interests, while other attributes that are highly valued by society, particularly those related to care processes, may be omitted or undervalued. This may be compounded by a lack of transparency to relevant stakeholders, resulting in an inability for them to participate in, or challenge, the decisions. The makes it likely that costly new technologies, for which inflated prices can be justified by the current value frameworks, are displacing aspects of healthcare that are highly valued by society.
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Affiliation(s)
- Jonathan Anthony Michaels
- Health Economics and Decision Science, University of Sheffield School of Health and Related Research, Sheffield, UK
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Bourque MA, Loiselle CG. Patients' cancer care perceptions conceptualized through the Cancer Experience Measurement Framework. BMC Health Serv Res 2022; 22:693. [PMID: 35606765 PMCID: PMC9125953 DOI: 10.1186/s12913-022-07946-y] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/26/2021] [Accepted: 04/11/2022] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Research on patients' perceptions of cancer care often documents sub-optimal experiences. Cancer care quality issues include restricted service access, lack of care coordination, gaps in follow-up and "generic" rather than person-centered care. Recent reports underscore that proactively and periodically seeking user feedback is crucial for timely care quality improvement. The present study aimed to analyze and thematically organize a large amount of feedback from patients who had been treated for cancer within the last 6 months. METHODS Randomly selected participants (N = 3,278) from 3 University-affiliated cancer centres in Montreal, Quebec, Canada completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and an open-ended question on their perceptions of the care they received. 692 participants responded to the latter. Guided by the Cancer Experience Measurement Framework (CEMF), their feedback was analyzed using a qualitative thematic approach. RESULTS Cancer care perceptions included sub-themes of care access and coordination, continuity/transition, and perceived appropriateness/personalisation of care. The most salient theme was captured by care access and coordination with 284 comments (44%) directly addressing these issues. The ways in which health care services were structured including setting, schedule, and location were often raised as cause for concerns. Issues surrounding cancer information/education, emotional support, and physical comfort were frequently reported as unmet needs. In addition, limited access to cancer services led patients to seek alternatives such as going to emergency departments and/or private care. CONCLUSIONS These findings are timely as they show that most patients are well aware of quality issues in cancer care and are willing to report candidly on these. Patient feedback also underscore the importance for cancer care institutions to periodically gather patient-reported data so that systems can re-calibrate their service offerings according to these data. Ultimately, patient reports will translate into enhanced quality, personalization, and safer cancer care provision.
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Affiliation(s)
- Michaela A Bourque
- Department of Psychiatry, McGill University, Montreal, Canada
- Department of Psychology, Crandall University, Moncton, Canada
| | - Carmen G Loiselle
- Department of Oncology, McGill University, Montreal, Canada.
- Ingram School of Nursing, McGill University, Montreal, Canada.
- Segal Cancer Centre, Jewish General Hospital, Centre Intégré Universitaire de Santé Et de Services Sociaux (CIUSSS), 680 Sherbrooke, Centre-Ouest, Montreal, QC, Canada.
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Stout A, Hamer J, Sharples T, Tahmasebi F. Less Is More: A Narrative Review of Deciding When Surgical Intervention Should Be Withheld. Cureus 2022; 14:e23285. [PMID: 35449641 PMCID: PMC9013421 DOI: 10.7759/cureus.23285] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/17/2022] [Indexed: 11/05/2022] Open
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Rogers CC, Pope S, Whitfield F, Cohn WF, Valdez RS. The lived experience during the peri-diagnostic period of breast cancer: A scoping review. PATIENT EDUCATION AND COUNSELING 2022; 105:547-585. [PMID: 34210570 DOI: 10.1016/j.pec.2021.06.017] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/18/2020] [Revised: 06/13/2021] [Accepted: 06/14/2021] [Indexed: 06/13/2023]
Abstract
OBJECTIVES The aim of this scoping review is to provide an overview of the existing research that investigates the lived experience during the peri-diagnostic period of breast cancer. METHODS Nine databases were searched for relevant literature between January 2007 and April 2019. Data were extracted and categorized using deductive and inductive approaches. RESULTS A majority of the 66 studies included used qualitative methods to retrospectively explore the treatment decision making process of female breast cancer patients. Patients experienced uncertainty, emotional distress, and a need for more information from providers and relied on social support and family guidance during this period. CONCLUSIONS The results of this review show that the burdens experienced during the peri-diagnostic period parallel those in later periods of cancer care. However, these burdens are prompted by different circumstances. More research is needed to explore the lived experience during this period through the use of mixed-methods and by recruiting a diverse sample with regards to role in the breast cancer experience, age, gender, race, and ethnicity. PRACTICE IMPLICATIONS Interventions positioned at earlier points in the breast cancer experience should provide informational support, which could be delivered through shared decision making models. Additional support could be facilitated by patient navigation programs and health information technology.
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Affiliation(s)
- Courtney C Rogers
- Department of Engineering Systems and Environment, University of Virginia, Charlottesville, VA, United States; Department of Public Health Sciences, University of Virginia, Charlottesville, VA, United States
| | - Shannon Pope
- Department of Public Health Sciences, University of Virginia, Charlottesville, VA, United States
| | - Francesca Whitfield
- Department of Public Health Sciences, University of Virginia, Charlottesville, VA, United States
| | - Wendy F Cohn
- Department of Public Health Sciences, University of Virginia, Charlottesville, VA, United States
| | - Rupa S Valdez
- Department of Engineering Systems and Environment, University of Virginia, Charlottesville, VA, United States; Department of Public Health Sciences, University of Virginia, Charlottesville, VA, United States.
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Konishi T, Fujiogi M, Michihata N, Kumazawa R, Ohbe H, Matsui H, Fushimi K, Ogita M, Tanabe M, Seto Y, Yasunaga H. Interstitial lung disorders following postoperative radiotherapy with concurrent or sequential hormonal therapy for breast cancer: a nationwide database study in Japan. Breast Cancer 2022; 29:688-697. [PMID: 35217987 DOI: 10.1007/s12282-022-01346-0] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/25/2021] [Accepted: 02/13/2022] [Indexed: 11/28/2022]
Abstract
BACKGROUND Hormonal therapy and radiotherapy are conducted concurrently or sequentially after breast cancer surgery. It remains unclear whether concurrent or sequential treatment is safer in terms of lung complications. Using a Japanese nationwide database, this study aimed to compare the occurrence of severe lung complications between concurrent and sequential treatments. METHODS We identified patients who underwent partial mastectomy for stage 0-III breast cancer from July 2010 to March 2020 and received adjuvant hormonal therapy and radiotherapy concurrently (n = 1851) or sequentially (n = 18,429). Two propensity score analyses (1:4 matching and overlap weighting) were conducted to compare hospitalization for radiation pneumonitis and pneumonia within 1 year after surgery, and intensive care unit admission and mortality during the hospitalization. We conducted additional analyses stratified by hormonal drugs (aromatase inhibitors and tamoxifen). RESULTS The propensity score-matched analysis showed no significant differences in occurrence of hospitalization for radiation pneumonitis (0.27 vs. 0.58%, p = 0.10) and pneumonia (0.16 vs. 0.58%, p = 0.05) between the concurrent and sequential treatments. The overlap propensity score-weighted analysis also showed no significant differences (0.25 vs. 0.56%, p = 0.08 and 0.15 vs. 0.44%, p = 0.06, respectively). Intensive care unit admission and in-hospital mortality did not differ significantly between the two treatments. The stratified analysis showed similar results. CONCLUSION Our propensity score analyses revealed no significant differences in severe lung complications between concurrent and sequential hormonal therapy with radiotherapy following breast cancer surgery, regardless of the type of hormonal drugs. Clinicians can provide concurrent or sequential treatment with equivalent attention to early lung complications.
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Affiliation(s)
- Takaaki Konishi
- Department of Breast and Endocrine Surgery, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-8655, Japan. .,Department of Clinical Epidemiology and Health Economics, School of Public Health, The University of Tokyo, Tokyo, Japan.
| | - Michimasa Fujiogi
- Department of Clinical Epidemiology and Health Economics, School of Public Health, The University of Tokyo, Tokyo, Japan.,Department of Emergency Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
| | - Nobuaki Michihata
- Department of Health Services Research, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Ryosuke Kumazawa
- Department of Clinical Epidemiology and Health Economics, School of Public Health, The University of Tokyo, Tokyo, Japan
| | - Hiroyuki Ohbe
- Department of Clinical Epidemiology and Health Economics, School of Public Health, The University of Tokyo, Tokyo, Japan
| | - Hiroki Matsui
- Department of Clinical Epidemiology and Health Economics, School of Public Health, The University of Tokyo, Tokyo, Japan
| | - Kiyohide Fushimi
- Department of Health Policy and Informatics, Tokyo Medical and Dental University Graduate School, Tokyo, Japan
| | - Mami Ogita
- Department of Radiology, The University of Tokyo Hospital, Tokyo, Japan
| | - Masahiko Tanabe
- Department of Breast and Endocrine Surgery, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-8655, Japan
| | - Yasuyuki Seto
- Department of Breast and Endocrine Surgery, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo, 113-8655, Japan
| | - Hideo Yasunaga
- Department of Clinical Epidemiology and Health Economics, School of Public Health, The University of Tokyo, Tokyo, Japan
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“You have to be sure that the patient has the full picture”: Adaptation of the Best Case/Worst Case communication tool for geriatric oncology. J Geriatr Oncol 2022; 13:606-613. [DOI: 10.1016/j.jgo.2022.01.014] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/24/2021] [Revised: 01/10/2022] [Accepted: 01/24/2022] [Indexed: 12/21/2022]
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Yu X, Nakayama M, Wu MS, Kim YL, Mushahar L, Szeto CC, Schatell D, Finkelstein FO, Quinn RR, Duddington M. Shared Decision-Making for a Dialysis Modality. Kidney Int Rep 2022; 7:15-27. [PMID: 35005310 PMCID: PMC8720663 DOI: 10.1016/j.ekir.2021.10.019] [Citation(s) in RCA: 20] [Impact Index Per Article: 6.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/06/2021] [Revised: 10/14/2021] [Accepted: 10/18/2021] [Indexed: 02/06/2023] Open
Abstract
The prevalence of kidney failure continues to rise globally. Dialysis is a treatment option for individuals with kidney failure; after the decision to initiate dialysis has been made, it is critical to involve individuals in the decision on which dialysis modality to choose. This review, based on evidence arising from the literature, examines the role of shared decision-making (SDM) in helping those with kidney failure to select a dialysis modality. SDM was found to lead to more people with kidney failure feeling satisfied with their choice of dialysis modality. Individuals with kidney failure must be cognizant that SDM is an active and iterative process, and their participation is essential for success in empowering them to make decisions on dialysis modality. The educational components of SDM must be easy to understand, high quality, unbiased, up to date, and targeted to the linguistic, educational, and cultural needs of the individual. All individuals with kidney failure should be encouraged to participate in SDM and should be involved in the design and implementation of SDM approaches.
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Affiliation(s)
- Xueqing Yu
- Division of Nephrology, Guangdong Provincial People’s Hospital, Guangzhou, People’s Republic of China
- Correspondence: Xueqing Yu, Division of Nephrology, Guangdong Provincial People’s Hospital, 106th, Zhongshan Road II, Guangzhou 510080, People’s Republic of China.
| | | | - Mai-Szu Wu
- Division of Nephrology, Department of Internal Medicine, School of Medicine, College of Medicine, Taipei Medical University, Taipei, Taiwan
- Division of Nephrology, Department of Internal Medicine, Taipei Medical University-Shuang Ho Hospital, New Taipei City, Taiwan
| | - Yong-Lim Kim
- Department of Internal Medicine, School of Medicine, Kyungpook National University, Daegu, Republic of Korea
| | - Lily Mushahar
- Department of Nephrology, Hospital Tuanku Ja'afar, Seremban, Malaysia
| | - Cheuk Chun Szeto
- Department of Medicine & Therapeutics, Faculty of Medicine, The Chinese University of Hong Kong, Shatin, Hong Kong
| | - Dori Schatell
- Medical Education Institute, Inc., Madison, Wisconsin, USA
| | | | - Robert R. Quinn
- Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
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Scholz S, Teetz L. Smart health via mHealth? Potentials of mobile health apps for improving prevention and adherence of breast cancer patients. Digit Health 2022; 8:20552076221074127. [PMID: 35096411 PMCID: PMC8796094 DOI: 10.1177/20552076221074127] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/24/2021] [Accepted: 12/27/2021] [Indexed: 11/15/2022] Open
Abstract
Objective Today there are several health and medical apps (mHealth) in app stores. Germany is the world's first country that introduced apps paid by the regular health insurance service. Even though breast cancer is the most common cancer in women, mHealth for breast cancer has been largely unexplored. Methods A total of 33 apps from two major mobile application marketplaces (Google Play Store/Android; App Store/iOS) have been selected for analysis. Results The app analysis shows that there are currently only 10 mHealth apps in German, which are specifically dedicated to breast cancer patients. The features of these apps fall into two categories: improvement of health literacy and indirect intervention. These apps can be used for all phases of the patient journey starting with the diagnosis. Conclusions mHealth apps have the potential to support the adherence of breast cancer patients. In order to exploit this future potential, the app quality, as well as the information about the available apps, must be urgently improved. Currently, it is very difficult both for laypersons and for doctors/other therapists to identify high-quality apps. Guidance from independent or governmental institutions would be helpful to further the digitalization in health care.
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Affiliation(s)
- Stefanie Scholz
- SRH Fuerth University of Applied Sciences, Fuerth, Bayern, Germany
| | - Laura Teetz
- Sanacorp Pharmahandel GmbH (former: Bamberg University), Bamberg, Bayern, Germany
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Boaz H, Shuli BG. Involvement levels of breast cancer patients-Seeking trusted hospital and physician. J Health Psychol 2021; 27:2603-2612. [PMID: 34875916 DOI: 10.1177/13591053211062350] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
The active involvement levels of breast cancer patients (BCP) in treatment decisions range from 10% to 81%. We investigated the involvement levels of 179 Israeli breast cancer survivors, aged 30 to 81, in the choice of hospital, surgeon, surgical procedure, chemotherapy, and radiotherapy. High involvement was documented in location decisions (operating hospital 77%, chemotherapy facility 82%) as opposed to low involvement in treatment decisions (chemotherapy 30%-38%, radiotherapy 25%, surgical procedure 31%). Involvement was influenced by hospital and surgeon reputation, education level, and income. BCPs actively choose their treating facility and staff, and then follow their doctor's recommendations.
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Affiliation(s)
- Hovav Boaz
- The Max Stern Yezreel Valley College, Israel.,University of Haifa School of Public Health, Israel
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40
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Rivers AS, Sanford K. A special kind of stress: Assessing feelings of decisional distress for breast cancer treatment decisions. PATIENT EDUCATION AND COUNSELING 2021; 104:3038-3044. [PMID: 33941423 DOI: 10.1016/j.pec.2021.04.020] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/28/2020] [Revised: 03/19/2021] [Accepted: 04/22/2021] [Indexed: 06/12/2023]
Abstract
OBJECTIVE Women with breast cancer need to make difficult treatment decisions and may experience decisional distress (worry, anxiety, and thought intrusion) associated with these decisions. This study investigated ways that decisional distress was both associated with and distinct from other variables regarding decisional process and life functioning, and it investigated the validity of a decisional distress scale. METHODS A total of 263 women previously or currently diagnosed with breast cancer reported on initial treatment decisions regarding surgery, chemotherapy, or radiation, or decisions involving oral endocrine therapy (either currently or retrospectively). Participants completed online measures of decisional distress, alliance and confusion in patient-practitioner relationships, positive and negative interactions in close relationships, financial and general distress, and decision satisfaction. RESULTS Decisional distress demonstrated a unidimensional factor structure invariant across treatment context groups, a wide range of meaningful variation, significant correlations with all hypothesized variables (especially patient confusion), but also key distinctions from other variables. CONCLUSION Decisional distress is a meaningful construct that can be assessed with precision, and important for understanding medical decision-making processes and patient quality of life. PRACTICE IMPLICATIONS Assessing decisional distress is crucial for evaluating treatment decision outcomes. One key to reducing decisional distress may involve reducing patient confusion.
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Affiliation(s)
| | - Keith Sanford
- Department of Psychology and Neuroscience, Baylor University, Waco, USA
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Kuijpers MMT, van Veenendaal H, Engelen V, Visserman E, Noteboom EA, Stiggelbout AM, May AM, de Wit N, van der Wall E, Helsper CW. Shared decision making in cancer treatment: A Dutch national survey on patients' preferences and perceptions. Eur J Cancer Care (Engl) 2021; 31:e13534. [PMID: 34729832 PMCID: PMC9286689 DOI: 10.1111/ecc.13534] [Citation(s) in RCA: 18] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/21/2021] [Revised: 07/26/2021] [Accepted: 10/04/2021] [Indexed: 12/18/2022]
Abstract
Objective Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients. Methods An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018. Results Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 ± 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10—IQR 8–10). Its occurrence was perceived by 28% (N = 899), and short‐ and long‐term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short‐ and long‐term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed. Conclusion In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making.
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Affiliation(s)
- Marieke M T Kuijpers
- Julius Center for Health Sciences and Primary Care, Utrecht University, University Medical Center Utrecht, Utrecht, The Netherlands
| | - Haske van Veenendaal
- Dutch Federation of Cancer Patient Organisations, Utrecht, The Netherlands.,Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands
| | - Vivian Engelen
- Dutch Federation of Cancer Patient Organisations, Utrecht, The Netherlands
| | - Ella Visserman
- Dutch Federation of Cancer Patient Organisations, Utrecht, The Netherlands
| | - Eveline A Noteboom
- Julius Center for Health Sciences and Primary Care, Utrecht University, University Medical Center Utrecht, Utrecht, The Netherlands
| | - Anne M Stiggelbout
- Medical Decision Making, Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
| | - Anne M May
- Julius Center for Health Sciences and Primary Care, Utrecht University, University Medical Center Utrecht, Utrecht, The Netherlands
| | - Niek de Wit
- Julius Center for Health Sciences and Primary Care, Utrecht University, University Medical Center Utrecht, Utrecht, The Netherlands
| | - Elsken van der Wall
- Department of Medical Oncology, University Medical Center Utrecht, Utrecht, The Netherlands
| | - Charles W Helsper
- Julius Center for Health Sciences and Primary Care, Utrecht University, University Medical Center Utrecht, Utrecht, The Netherlands
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Role of GPs in shared decision making with patients about palliative cancer treatment: a qualitative study in the Netherlands. Br J Gen Pract 2021; 72:e276-e284. [PMID: 34990389 PMCID: PMC8843392 DOI: 10.3399/bjgp.2021.0446] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/20/2021] [Accepted: 10/21/2021] [Indexed: 11/12/2022] Open
Abstract
Background GPs are well placed to enhance shared decision making (SDM) about treatment for patients with advanced cancer. However, to date, little is known about GPs’ views about their contribution to SDM. Aim To explore GPs’ perspectives on their role in SDM about palliative cancer treatment and the requirements they report to fulfil this role. Design and setting Qualitative interview study among Dutch GPs. Method GPs were sampled purposefully and conveniently. In-depth, semi-structured interviews were conducted, recorded, and transcribed verbatim. Transcripts were analysed by thematic analysis. Results Fifteen GPs took part in this study. Most of them reported practices that potentially support SDM: checking the quality of a decision, complementing SDM, and enabling SDM. Even though most of the GPs believed that decision making about systemic cancer treatment is primarily the oncologist’s responsibility, they did recognise their added value in the SDM process because of their gatekeeper position, the additional opportunity they offer patients to discuss treatment decisions, and their knowledge and experience as primary healthcare providers at the end of life. Requirements for them to support the SDM process were described as: good collaboration with oncologists; sufficient information about the disease and its treatment; time to engage in conversations about treatment; a trusting relationship with patients; and patient-centred communication. Conclusion GPs may support SDM by checking the quality of a decision and by complementing and enabling the SDM process to reach high-quality decisions. This conceptualisation of the GP’s supporting role in SDM may help us to understand how SDM is carried out through interprofessional collaboration and provide tools for how to adopt a role in the interprofessional SDM process.
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Noteboom EA, May AM, van der Wall E, de Wit NJ, Helsper CW. Patients' preferred and perceived level of involvement in decision making for cancer treatment: A systematic review. Psychooncology 2021; 30:1663-1679. [PMID: 34146446 PMCID: PMC8518833 DOI: 10.1002/pon.5750] [Citation(s) in RCA: 51] [Impact Index Per Article: 12.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/22/2021] [Revised: 05/28/2021] [Accepted: 06/11/2021] [Indexed: 11/08/2022]
Abstract
OBJECTIVE Patient involvement in decision making is conditional for personalised treatment decisions. We aim to provide an up-to-date overview of patients' preferred and perceived level of involvement in decision making for cancer treatment. METHODS A systematic search was performed in PubMed, EMBASE, PsycINFO and CINAHL for articles published between January 2009 and January 2020. Search terms were 'decision making', 'patient participation', 'oncology', 'perception' and 'treatment'. Inclusion criteria were: written in English, peer-reviewed, reporting patients' preferred and perceived level of involvement, including adult cancer patients and concerning decision making for cancer treatment. The percentages of patients preferring and perceiving an active, shared or passive decision role and the (dis)concordance are presented. Quality assessment was performed with a modified version of the New-Castle Ottawa Scale. RESULTS 31 studies were included. The median percentage of patients preferring an active, shared or passive role in decision making was respectively 25%, 46%, and 27%. The median percentage of patients perceiving an active, shared or passive role was respectively 27%, 39%, and 34%. The median concordance in preferred and perceived role of all studies was 70%. Disconcordance was highest for a shared role; 42%. CONCLUSIONS Patients' preferences for involvement in cancer treatment decision vary widely. A significant number of patients perceived a decisional role other than preferred. Improvements in patient involvement have been observed in the last decade. However, there is still room for improvement and physicians should explore patients' preferences for involvement in decision making in order to truly deliver personalised cancer care.
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Affiliation(s)
- Eveline A. Noteboom
- Department: Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrecht UniversityUtrechtThe Netherlands
| | - Anne M. May
- Department: Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrecht UniversityUtrechtThe Netherlands
| | - Elsken van der Wall
- Department: Medical OncologyUniversity Medical Center UtrechtUtrecht UniversityUtrechtThe Netherlands
| | - Niek J. de Wit
- Department: Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrecht UniversityUtrechtThe Netherlands
| | - Charles W. Helsper
- Department: Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrecht UniversityUtrechtThe Netherlands
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Varnier R, Sajous C, de Talhouet S, Smentek C, Péron J, You B, Reverdy T, Freyer G. Using Breast Cancer Gene Expression Signatures in Clinical Practice: Unsolved Issues, Ongoing Trials and Future Perspectives. Cancers (Basel) 2021; 13:4840. [PMID: 34638325 PMCID: PMC8508256 DOI: 10.3390/cancers13194840] [Citation(s) in RCA: 13] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/13/2021] [Revised: 09/14/2021] [Accepted: 09/24/2021] [Indexed: 12/11/2022] Open
Abstract
The development of gene expression signatures since the early 2000's has offered standardized assays to evaluate the prognosis of early breast cancer. Five signatures are currently commercially available and recommended by several international guidelines to individualize adjuvant chemotherapy decisions in hormone receptors-positive/HER2-negative early breast cancer. However, many questions remain unanswered about their predictive ability, reproducibility and external validity in specific populations. They also represent a new hope to tailor (neo)adjuvant systemic treatment, adjuvant radiation therapy, hormone therapy duration and to identify a subset of patients who might benefit from CDK4/6 inhibitor adjuvant treatment. This review will highlight these particular issues, address the remaining questions and discuss the ongoing and future trials.
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Affiliation(s)
- Romain Varnier
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
| | - Christophe Sajous
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
| | - Solène de Talhouet
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
| | - Colette Smentek
- Laboratoire Parcours Santé Systémique, EA 4129, Université Claude Bernard Lyon 1, 69372 Lyon, France;
| | - Julien Péron
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
- Laboratoire de Biométrie et Biologie Evolutive, Equipe Biostatistique-Santé, CNRS UMR 5558, Université Claude Bernard Lyon 1, 69622 Villeurbanne, France
| | - Benoît You
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
- EA3738, CICLY & CITOHL, Université Claude Bernard Lyon 1, 69310 Lyon, France
| | - Thibaut Reverdy
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
| | - Gilles Freyer
- Medical Oncology Department, Hôpital Lyon Sud, Institut de Cancérologie des Hospices Civils de Lyon (IC-HCL), Université Claude Bernard Lyon 1, 69310 Lyon, France; (C.S.); (S.d.T.); (J.P.); (B.Y.) ; (T.R.); (G.F.)
- EA3738, CICLY & CITOHL, Université Claude Bernard Lyon 1, 69310 Lyon, France
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Lee KP, Wong SYS, Yip BHK, Wong ELY, Lai FTT, Chan D, Chau P, Luk L, Yeoh EK. How common are Chinese patients with multimorbidity involved in decision-making and having a treatment plan? A cross-sectional study. Int J Clin Pract 2021; 75:e14286. [PMID: 33914995 DOI: 10.1111/ijcp.14286] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/12/2020] [Revised: 11/09/2020] [Accepted: 04/26/2021] [Indexed: 11/28/2022] Open
Abstract
BACKGROUND Creating a treatment plan (TP) through shared decision-making (SDM) with healthcare professionals is of paramount importance for patients with multimorbidity (MM). This study aims to estimate the prevalence of SDM and TP in patients with MM and study the association between SDM/TP with patients' confidence to manage their diseases and hospitalization within the previous 1 year. METHOD This cross-sectional study used an internationally recognized survey. A total of 1032 patients aged 60 or above with MM were recruited from a specialist outpatient clinic, general outpatient clinic (GOPC) and a geriatric day hospital. The proportion of patients reported to have SDM and TP was estimated. Associations between the presence of SDM/TP and patients' demographic data, the confidence level to manage their illnesses and hospitalization in previous 1 year were then studied using logistic regression. RESULTS The prevalence of SDM and TP was 35.8% and 82.1%, respectively. The presence of TP was associated with receiving healthcare from the same doctor or in the same facilities and being recruited from GOPC. The presence of SDM (OR = 1.352, P = .089) and TP (OR = 2.384, P < .001) was associated with enhanced confidence in dealing with diseases. CONCLUSION Most people with MM had TP in Hong Kong, but fewer patients had SDM. PRACTICE IMPLICATIONS Ways to promote SDM in HK are needed.
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Affiliation(s)
- Kam Pui Lee
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Samuel Yeung Shan Wong
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Benjamin Hon Kei Yip
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Eliza Lai Yi Wong
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Francisco T T Lai
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Dicken Chan
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Patsy Chau
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Lawrence Luk
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
| | - Eng Kiong Yeoh
- JC School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, China
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Ismail MA, Midin M. Shared Decision-Making and Role Preference Among Patients With Schizophrenia in Malaysia: A Cross-Sectional Study. Front Psychiatry 2021; 12:680800. [PMID: 34381387 PMCID: PMC8350437 DOI: 10.3389/fpsyt.2021.680800] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/15/2021] [Accepted: 06/25/2021] [Indexed: 01/19/2023] Open
Abstract
Introduction: Shared decision-making (SDM) is recognized as a promising strategy for improving collaboration between clinicians and their patients in achieving recovery. In Malaysia, SDM among people with schizophrenia is still lacking both in practice and in research. This study aimed to determine the level of SDM and role preference and their associated factors among patients with schizophrenia in Malaysia. Methods: A cross-sectional study was conducted on 86 outpatient attendees with schizophrenia at a teaching hospital in Kuala Lumpur, Malaysia. The nine-item Shared Decision Making Questionnaire and Control Preference Scale were used to assess perceived SDM experience and role preference, respectively. Linear and logistic regression models were used to analyze the factors associated with SDM and role preference, respectively. Factors with a p <0.25 from the simple regression analyses were controlled as the covariates in the multiple regression analyses. Results: The study respondents were predominantly female, single, and unemployed, with a mean age of 44 years. Only 35% of the participants reported having high SDM experiences, even though the majority (56%) preferred autonomous role preference. Among the participants who preferred autonomous roles, only 40% experienced high SDM. High SDM was found to be significantly associated with being younger (B = -0.33, 95% CI = -0.67 to -0.003) and being non-clozapine users (B = 19.90, 95% CI = 9.39-30.41), while autonomous role preference was significantly associated with a lower level of insight [adjusted odds ratio (AOR) = 0.84, 95% CI = 0.72-0.99] and being on oral antipsychotic drugs only (AOR = 2.94, 95% CI = 1.10-7.82). Conclusion: The practice of SDM is still lacking in the treatment of patients with schizophrenia in Malaysia, even though many of them preferred to be involved in the decision-making pertaining to their treatment. This study indicates the need for clinicians to improve their patients' involvement in the treatment process. More research is needed on how SDM can be implemented in patients with schizophrenia, especially in Asian population settings.
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Affiliation(s)
| | - Marhani Midin
- Psychiatry Department, Universiti Kebangsaan Malaysia Medical Center (UKMMC), Kuala Lumpur, Malaysia
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Singh S, Orlando JM, Alghamdi ZS, Franklin KA, Lobo MA. Reframing Clinical Paradigms: Strategies for Improving Patient Care Relationships. Phys Ther 2021; 101:6178887. [PMID: 33742681 DOI: 10.1093/ptj/pzab095] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/14/2020] [Revised: 12/17/2020] [Accepted: 02/11/2021] [Indexed: 12/21/2022]
Abstract
This article presents strategies for reframing clinical paradigms to build better therapeutic relationships with patients and the members of their support network from the unique and important lens of a parent and disability researcher. First, a brief history of the evolution of models of care is presented, and implementation of the current biopsychosocial model is discussed. Then, evidence-based practice and the role of the patient perspective is considered. Next, specific examples, tools, techniques, guidelines, and resources to foster the demonstration of patient-informed respect and patient-centered communication in clinical practice are provided. Examples and resources are presented that can be accessed and implemented immediately, without cost to the practitioner and with the vast potential to improve care, therapeutic relationships, and patient outcomes. It is important for health care providers and researchers in all practice areas and across all experience levels to regularly evaluate their psychosocial skills. It is critical that the voices of patients and the members of their support network are central in this process. This can enable health care providers to acknowledge areas for growth and to implement changes effectively and efficiently at the individual level to facilitate changes across the broader spectrum of health care practice.
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Affiliation(s)
- Shailen Singh
- Department of Organization, Workforce, and Leadership Studies, Texas State University, Round Rock, Texas, USA
| | - Julie M Orlando
- Biomechanics and Movement Science Program, University of Delaware, Newark, Delaware, USA
| | - Zainab S Alghamdi
- Biomechanics and Movement Science Program, University of Delaware, Newark, Delaware, USA
| | | | - Michele A Lobo
- Department of Physical Therapy and Biomechanics and Movement Science Program, University of Delaware, Newark, Delaware, USA
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Mazzoni D, Monzani D, Riva P, Pravettoni G. Does being involved by doctors satisfy patients' fundamental psychological needs? A study on a large European sample. PSYCHOL HEALTH MED 2021; 27:1397-1409. [PMID: 34190661 DOI: 10.1080/13548506.2021.1946104] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/21/2022]
Abstract
The present work was aimed at investigating whether the patients' involvement by their healthcare providers may satisfy patients' fundamental psychological needs (i.e. self-esteem, belonging, control, meaningful existence), which in turn, can impact their psychological well-being. Based on the European Quality of Life Survey data, the sample included 10,427 European adults who, in the last 12 months, visited GP/family doctors and hospital/medical specialists. Among them, 51.3% declared to have a chronic disease. Results showed that the experience of being involved by GP/family doctors and hospital/medical specialists had a positive effect on psychological well-being and that this effect was mediated by the satisfaction of all four needs. Moreover, the results of the moderated mediation model showed that the indirect effect of the involvement by GP/family doctors and hospital/medical specialists on psychological well-being through belonging was moderated by the presence or absence of a chronic condition. The study provides a novel contribution in investigating the positive effects of the patient's involvement, emphasizing its importance for patient's needs satisfaction, and its role appears particularly beneficial for the ones living with a chronic condition.
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Affiliation(s)
- Davide Mazzoni
- Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy
| | - Dario Monzani
- Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy.,Applied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCS, Milan, Italy
| | - Paolo Riva
- Department of Psychology, University of Milano-Bicocca, Milan, Italy
| | - Gabriella Pravettoni
- Department of Oncology and Hemato-Oncology, University of Milan, Milan, Italy.,Applied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCS, Milan, Italy
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Jennings S, Anstey S, Bower J, Brewster A, Buckman J, Fenlon D, Fitzsimmons D, Watts T. Experiences of cancer immunotherapy with immune checkpoint inhibitors (ExCIm)-insights of people affected by cancer and healthcare professionals: a qualitative study protocol. BMJ Open 2021; 11:e043750. [PMID: 34045214 PMCID: PMC8162091 DOI: 10.1136/bmjopen-2020-043750] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/26/2022] Open
Abstract
INTRODUCTION There is a global interest in cancer immunotherapy. Clinical trials have found that one group, immune checkpoint inhibitors (ICIs), has demonstrated clinical benefits across various cancers. However, research focused on the experiences of people affected by cancer who have undergone this treatment using qualitative methodology is currently limited. Moreover, little is known about the experiences and education needs of the healthcare staff supporting the people receiving these immunotherapies. This study therefore seeks to explore the experiences of using ICIs by both the people affected by cancer and the healthcare professionals who support those people, and use the findings to make recommendations for ICI supportive care guidance development, cancer immunotherapy education materials for healthcare professionals, cancer policy and further research. METHODS AND ANALYSIS Patient participants (n=up to 30) will be recruited within the UK. The sample will incorporate a range of perspectives, sociodemographic factors, diagnoses and ICI treatments, yet share some common experiences. Healthcare professionals (n=up to 15) involved in supporting people receiving immunotherapy will also be recruited from across the UK. Data will be generated through in-depth, semistructured interviews. Reflexive thematic analysis will be used to obtain thorough understanding of individual's perspectives on, and experiences of, immunotherapy. Study dates are as follows: December 2019-March 2022. ETHICS AND DISSEMINATION The research will be performed in accordance with the UK Policy for Health and Social Care Research and Cardiff University's Research Integrity and Governance Code of Practice (2018). The study received ethical approval from the West Midlands and Black Country Research Ethics Committee in October 2019. Health Research Authority and Health and Care Research Wales approvals were confirmed in December 2019. All participants will provide informed consent. Findings will be published in peer-reviewed journals, non-academic platforms, the Macmillan Cancer Support website, disseminated at relevant national and international conferences and presented via a webinar. The study is listed on the National Institute for Health Research (NIHR) Clinical Research Network Central Portfolio.
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Affiliation(s)
| | - Sally Anstey
- School of Healthcare Sciences, Cardiff University, Cardiff, UK
| | - Janet Bower
- Chemotherapy Day Unit, Hywel Dda University Health Board, Haverfordwest, UK
| | - Alison Brewster
- South West Wales Cancer Centre, Swansea Bay University Health Board, Swansea, UK
| | | | - Deborah Fenlon
- Department of Nursing, College of Human and Health Sciences, Swansea University, Swansea, UK
| | - Deborah Fitzsimmons
- Swansea Centre for Health Economics, College of Human and Health Sciences, Swansea University, Swansea, UK
| | - Tessa Watts
- School of Healthcare Sciences, Cardiff University, Cardiff, UK
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Diekmann A, Schellenberger B, Reck S, Heuser C, Geiser F, Wirtz M, Ansmann L, Ernstmann N. Is patient participation in multidisciplinary tumor conferences associated with their fear of progression? Psychooncology 2021; 30:1572-1581. [PMID: 34004041 DOI: 10.1002/pon.5733] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/11/2021] [Revised: 05/10/2021] [Accepted: 05/12/2021] [Indexed: 11/11/2022]
Abstract
PURPOSE Previous studies found that some breast cancer patients in Germany are invited to participate in a multidisciplinary tumor conference (MTC) during the discussion of their own case. MTCs are regular meetings of a treatment team in which the diagnosis and treatment plan of cancer patients are discussed. Psychological consequences concerning the patients' participation in an MTC have not been examined yet. This study examines the association between patients' participation in MTC and patients' fear of progression (FoP). METHODS This analysis is part of a larger project named "Patient participation in multidisciplinary tumor conferences in Breast Cancer Care" (PINTU) which is a multicenter observational mixed-methods study. The study was conducted in six breast and gynecological cancer centers in North Rhine-Westphalia, Germany. Data were collected from 2018 to 2020 by patient survey at three time points. Patients with (n = 81) and without (n = 120) MTC participation were compared. FoP was measured with a 12-item short form of the FoP Questionnaire (FoP-Q-SF) at all three measurement time points. Data analysis included descriptive statistics, a one-way repeated variance analysis (ANOVA), and a one-way repeated ANCOVA using the propensity score as a covariate. RESULTS Data of n = 201 patients were included in the analysis. In general, FoP scores decreased in both groups from T0 to T2 (F = 36.539, p < 0.001, η2 = 0.155). Non-participating patients did not differ with regard to their FoP from patients who participated in an MTC before and after participation. The results of AN(C)OVA revealed no significant effects concerning the influence of patient participation in an MTC on FoP (F = 0.014, p = 0.907, η2 = <0.001 and (F = 0.013, p = 0.909, η2 = <0.001). CONCLUSION Since the FoP is not influenced by participation, the findings do not support recommendations for or against patient participation in an MTC. Further research should focus on the question of which patient groups might benefit from participation in an MTC with regard to which outcome variables.
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Affiliation(s)
- Annika Diekmann
- Department for Psychosomatic Medicine and Psychotherapy, Center for Health Communication and Health Services Research, University Hospital Bonn, Bonn, Germany.,Center for Integrated Oncology Bonn (CIO), University Hospital Bonn, Bonn, Germany
| | - Barbara Schellenberger
- Department for Psychosomatic Medicine and Psychotherapy, Center for Health Communication and Health Services Research, University Hospital Bonn, Bonn, Germany.,Center for Integrated Oncology Bonn (CIO), University Hospital Bonn, Bonn, Germany
| | - Sebastian Reck
- Department for Psychosomatic Medicine and Psychotherapy, Center for Health Communication and Health Services Research, University Hospital Bonn, Bonn, Germany.,Center for Integrated Oncology Bonn (CIO), University Hospital Bonn, Bonn, Germany
| | - Christian Heuser
- Department for Psychosomatic Medicine and Psychotherapy, Center for Health Communication and Health Services Research, University Hospital Bonn, Bonn, Germany.,Center for Integrated Oncology Bonn (CIO), University Hospital Bonn, Bonn, Germany
| | - Franziska Geiser
- Center for Integrated Oncology Bonn (CIO), University Hospital Bonn, Bonn, Germany.,Department for Psychosomatic Medicine and Psychotherapy, Faculty of Medicine, University Hospital Bonn, Bonn, Germany
| | - Markus Wirtz
- Department of Research Methods, University of Education, Freiburg, Germany
| | - Lena Ansmann
- Division for Organizational Health Services Research, Department of Health Services Research, School of Medicine and Health Sciences, Carl von Ossietzky University Oldenburg, Oldenburg, Germany
| | - Nicole Ernstmann
- Department for Psychosomatic Medicine and Psychotherapy, Center for Health Communication and Health Services Research, University Hospital Bonn, Bonn, Germany.,Center for Integrated Oncology Bonn (CIO), University Hospital Bonn, Bonn, Germany
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