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Dolan H, Bateson D, Li M, Thompson R, Tam CWM, Bonner C, Trevena L. Development and pilot testing of the Population And ContExt adaption of decision aids (PACE) framework. PEC INNOVATION 2024; 5:100347. [PMID: 39430917 PMCID: PMC11490666 DOI: 10.1016/j.pecinn.2024.100347] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 11/07/2023] [Revised: 09/18/2024] [Accepted: 09/27/2024] [Indexed: 10/22/2024]
Abstract
Objective This study aimed to develop and pilot test a new framework for the adaptation of patient decision aids (PtDAs) using a specific case example of contraceptive method PtDAs for Chinese-speaking migrant women. Methods We developed a novel approach for adaptation - the PACE (Population And ContExt adaption of decision aids) framework - that incorporated both existing models and frameworks and innovative elements. It involves six stages: selection and appraisal; review by content experts; content validity and usability pre-testing; translation; decisional needs assessment; and perceived acceptability, usability and feasibility testing. We then followed the framework to pilot and adapt a suite of PtDAs on contraceptive methods for Chinese-speaking migrant women in Australia. Twenty healthcare providers and 22 Chinese migrant women participated during the stages five and six. Results The pilot resulted in adapted PtDAs that were acceptable to end users. For future research, we proposed further recommendations and considerations based on lessons learnt, which include flexibility in applying the framework and considering an additional real-world evaluation step. Conclusion Adaptation of PtDAs required a multi-stage and multidisciplinary team-based and pragmatic approach as exemplified in the application of the PACE framework. Innovation The PACE framework developed and piloted in this study fills a crucial gap in knowledge about how to adapt PtDAs for new populations and contexts and provides an innovative and systemic approach to guide the adaptation process.
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Affiliation(s)
- Hankiz Dolan
- Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Deborah Bateson
- Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Mu Li
- Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Rachel Thompson
- Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
| | - Chun Wah Michael Tam
- Primary and Integrated Care Unit, South Western Sydney Local Health District, Sydney, Australia
- Discipline of General Practice, School of Clinical Medicine, UNSW Medicine & Health, Sydney, Australia
| | - Carissa Bonner
- Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
- Menzies Centre for Health Policy & Economics, The University of Sydney, Australia
| | - Lyndal Trevena
- Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
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Hoffmann TC, Gibson E. An international environmental scan of the scope and characteristics of patient decision aids which are freely available online. PATIENT EDUCATION AND COUNSELING 2024; 130:108484. [PMID: 39531861 DOI: 10.1016/j.pec.2024.108484] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/16/2024] [Revised: 10/12/2024] [Accepted: 10/21/2024] [Indexed: 11/16/2024]
Abstract
OBJECTIVE To analyse the scope and characteristics of freely available online patient decision aids. METHODS An international environmental scan of online decision aids, with no language restriction, was conducted by searching aids in the recent Cochrane review and 35 online sources. Aid characteristics were extracted and analysed. RESULTS Of 1555 decision aids identified, there were 1222 unique aids after removing duplicates. Of these, 785 met eligibility criteria. The aids were from 17 countries (30 % from the Netherlands, 20 % from the US) and 44 % in English. Nearly all had a downloadable PDF or were printable and 32 % were interactive web-based. Many aids (72 %) were about a treatment decision. Most common diseases addressed were cancer (23 %), especially breast cancer, musculoskeletal diseases (11 %), and genitourinary system diseases (10 %). CONCLUSIONS There are many freely available decision aids, with most addressing treatment decisions and particular health conditions. Many (21 %) of the aids identified were duplicates, some topics are covered by multiple versions of decision aids, and other topics have few decision aids. PRACTICE IMPLICATIONS While many decision aids exist online, initiatives are needed to minimise aid duplication, achieve better distribution of aids across health decisions/topics, encourage greater collaboration between developers, and adaption of existing aids.
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Affiliation(s)
- Tammy C Hoffmann
- Institute for Evidence-Based Healthcare, Bond University, Australia.
| | - Elizabeth Gibson
- Institute for Evidence-Based Healthcare, Bond University, Australia
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Amundsen PA, Engedahl M, Burton K, Malmberg-Heimonen I, Grotle M, Froud R. Translation and cultural adaptation of evidence-informed leaflets on the work-health interface: a pragmatic approach to cultural adaptation. Prim Health Care Res Dev 2024; 25:e42. [PMID: 39390762 PMCID: PMC11569859 DOI: 10.1017/s1463423624000380] [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: 01/26/2023] [Revised: 05/21/2024] [Accepted: 06/09/2024] [Indexed: 10/12/2024] Open
Abstract
AIM Our aim was to translate and culturally adapt three evidence-informed leaflets on the work-health interface from English into Norwegian. Integral to this aim was the exploration of the quality and acceptability of each of the adapted leaflets to Norwegian-speaking stakeholders; general practitioners, people who deal with health issues in the workplace, and the general population. BACKGROUND Common health problems, such as musculoskeletal pain, account for most workdays lost and disability benefits in Norway. To facilitate return to work, it may be important to have access to evidence-informed information on the work-health interface for stakeholders involved in sickness absence processes. However, there is limited information material available in Norwegian that is tailored for the different stakeholders. Cultural adaptation is an emerging strategy for implementing health information across different populations and regions. Guidelines on cultural adaptation are not well-suited for translating and adapting evidence-informed health information material. METHODS We conducted a pragmatic cultural adaptation process informed by existing guidelines. Our conceptual framework for adaptation is situated between adaptation and translation and comprises appraisal, forward- and back-translation, review in multiple steps, sense checking, and re-designing using a transcreation approach. Using an online survey, we aimed to evaluate the overall quality, value, acceptability, and clarity of each of the adapted leaflets to a total of 30 end-users. FINDINGS We translated and culturally adapted three leaflets from English to Norwegian. Adapted leaflets were found to be clearly presented, acceptable, and valued by 45 Norwegian end-users. No differences in key concepts between original and back-translated leaflets emerged through the review process by the original author and forward translators. We used a pragmatic approach in this study that might be useful to others culturally adapting evidence-informed health information material.
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Affiliation(s)
| | - Martin Engedahl
- School of Health Sciences, Kristiana University College, Oslo, Norway
| | - Kim Burton
- Professor of Occupational Healthcare, University of Huddersfield, Huddersfield, UK
| | - Ira Malmberg-Heimonen
- Department of Social Work, Child Welfare and Social Policy, Oslo Metropolitan University, Oslo, Norway
| | - Margreth Grotle
- Department of Rehabilitation Science and Health Technology, Oslo Metropolitan University, Oslo, Norway
| | - Robert Froud
- School of Health Sciences, Kristiana University College, Oslo, Norway
- Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Coventry, UK
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Binion KE, Perreira KM, Villa Torres L, White JT, Hernandez GC, Kaefer M, Misseri R, Ross S, Chan KH. A multi-site cultural and linguistic adaptation of a hypospadias decision aid for Latinx communities. J Pediatr Urol 2024; 20:674.e1-674.e9. [PMID: 38688803 PMCID: PMC11330363 DOI: 10.1016/j.jpurol.2024.04.002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/09/2023] [Revised: 02/19/2024] [Accepted: 04/03/2024] [Indexed: 05/02/2024]
Abstract
INTRODUCTION Latinx, Spanish-speaking (LSS) patients are more likely to experience decisional conflict and regret about healthcare decisions than non-Hispanic, white, English-speaking patients. OBJECTIVE To adapt the Hypospadias Hub (Hub), a rigorously developed and tested web-based decision aid (DA), for LSS parents. METHODS Guided by the Ecological Validity Model (EVM), a heuristic framework was followed to culturally adapt the Hub (see Extended Summary Figure). In stage 1, recommendations were obtained from a focus group with members of the institution's Latinx Community Review Board (Latinx CRB) and semi-structured interviews with pediatricians with Latinx-focused practices. In stage 2, preliminary cultural modifications were made, the Hub was translated into Spanish, and a second focus group with the Latinx CRB was convened to review the revised Hub. In stage 3, semi-structured interviews with LSS parents of healthy boys (i.e., without hypospadias) ≤ 5 years old were conducted to identify any cultural adaptations and/or usability issues regarding the revised Hub. In stage 4, based on parents' feedback, final revisions to the Hub were made. The focus groups and parent interviews were conducted in Spanish; then, the recordings were professionally transcribed in Spanish and translated into English. Interviews with pediatricians were conducted in English; then, the recordings were professionally transcribed. Three coders conducted a qualitative content analysis to identify areas for revision. Changes were applied iteratively. RESULTS Participants included 3 Latinx CRB members (2 women, 1 did not disclose gender; mean age = 48.3, SD = 21.2), 3 non-Latinx pediatricians (2 women, 1 man; mean age = 49.6, SD = 9.1), and 5 Latinx mothers (mean age = 34.0, SD = 1.26). Participants recommended: 1) featuring video testimonials from Latinx families or including Spanish voice-overs/subtitles; 2) diversifying racial/ethnic/geographic representation and including extended families in photographs/illustrations; 3) adding information about health insurance coverage and circumcision, 4) reassuring parents that the condition is not their fault, 5) considering cultural values (e.g., reliance on expert advice), and 6) clarifying medical terminology. Feedback related to seven EVM dimensions: concepts, content, context, goals, language, metaphors, and methods. DISCUSSION Participants perceived the Hub to be informative in guiding parents' treatment decisions. Revisions were reasonable and acceptable for a linguistic and cultural adaptation for LSS parents. CONCLUSIONS We identified and implemented preliminary cultural modifications to the Hub and applied user-centered design methods to test and revise the website. The product is a culturally appropriate DA for LSS parents. Next, English and Spanish-versions of the Hub will be tested in a randomized controlled trial.
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Affiliation(s)
- Kelsey E Binion
- Department of Health Policy & Management, Indiana University Richard M. Fairbanks School of Public Health, Indianapolis, IN, USA.
| | - Krista M Perreira
- Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
| | - Laura Villa Torres
- Public Health Leadership Program, University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA.
| | - J Tommy White
- North Carolina Clinical and Translational Sciences Institute, University of North Carolina, Chapel Hill, NC, USA.
| | - Guadalupe C Hernandez
- North Carolina Clinical and Translational Sciences Institute, University of North Carolina, Chapel Hill, NC, USA.
| | - Martin Kaefer
- Department of Urology, Indiana University School of Medicine, Indianapolis, IN, USA.
| | - Rosalia Misseri
- Department of Urology, Indiana University School of Medicine, Indianapolis, IN, USA.
| | - Sherry Ross
- Department of Urology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
| | - Katherine H Chan
- Department of Urology, University of North Carolina School of Medicine, Chapel Hill, NC, USA; Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
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Gendler Y, Blau A. Exploring Cultural and Religious Effects on HPV Vaccination Decision Making Using a Web-Based Decision Aid: A Quasi-experimental Study. Med Decis Making 2024; 44:426-436. [PMID: 38600776 DOI: 10.1177/0272989x241240466] [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: 04/12/2024]
Abstract
BACKGROUND Human papillomavirus (HPV) poses a significant public health concern, as it is linked to various serious health conditions such as cancer and genital warts. Despite the vaccine's safety, efficacy, and availability through national school programs, HPV vaccination rates remain low in Israel, particularly within the ultra-Orthodox community due to religious and cultural barriers. Decision aids have shown promise in facilitating shared decision making and promoting informed choices in health care. This study aimed to assess the impact of a novel Web-based decision aid on HPV vaccination intentions, knowledge, decision self-efficacy, and decisional conflict among Israeli parents and young adults, with a specific focus on exploring differences between religious groups. METHODS Two Web-based decision aids were developed for parents of children aged 10 to 17 y (n = 120) and young adults aged 18 to 26 y (n = 160). A quasi-experimental study was conducted among Hebrew-speaking parents and young adults eligible for HPV vaccination. Participants completed pre- and postintervention questionnaires assessing vaccination intentions, knowledge about HPV, decision self-efficacy, and decisional conflict. RESULTS The decision aid significantly improved intentions toward HPV vaccination among most religious groups, except the Jewish ultra-Orthodox community. Ultra-Orthodox participants exhibited reluctance to vaccinate themselves or their children (odds ratio [OR] = 0.23, P < 0.001 for parents' group; OR = 0.43, P < 0.001 for young adults' group). Parental preference for vaccinating girls over boys (OR = 2.66, P < 0.001) and increased inclination for vaccination among Muslim-Arabs were observed (OR = 3.12, P < 0.001). Knowledge levels improved among ultra-Orthodox participants but not decisional conflict and self-efficacy. CONCLUSIONS The Web-based decision aid positively influenced the quality of HPV vaccination decision making among various religious groups in Israel, except for the ultra-Orthodox community. Culturally tailored approaches that address specific community concerns are essential for informed decision making. HIGHLIGHTS Human papillomavirus (HPV) vaccination rates in Israel are substantially lower than those of other routine vaccinations, particularly among religious and ultra-Orthodox communities, largely due to sociocultural beliefs and misinformation.A newly developed Web-based decision aid was implemented in a study involving parents and young adults to evaluate its impact on vaccination intent, knowledge about HPV, decision self-efficacy, and decisional conflict.While the decision aid significantly enhanced vaccination intention, knowledge, and perceived behavioral control among various religious groups, it did not yield the same outcomes within the ultra-Orthodox Jewish community.This study highlights the vital role of cultural adaptation in HPV vaccine decision aids within Israel, revealing significant disparities in vaccination perceptions and decisions among diverse religious and cultural groups.
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Affiliation(s)
- Yulia Gendler
- Department of Nursing, School of Health Sciences, Ariel University, Ariel, Israel
| | - Ayala Blau
- Department of Nursing, School of Health Sciences, Ariel University, Ariel, Israel
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Veerhuis N, Merizzi A, Papoulias S, Bradbury C, Sheret K, Traynor V. 'It is empowering and gives people dignity in a very difficult process': A multistage, multimethod qualitative study to understand the views of end users in the cultural adaptation of a dementia and driving decision aid. Health Expect 2024; 27:e14006. [PMID: 38497286 PMCID: PMC10945392 DOI: 10.1111/hex.14006] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/31/2023] [Revised: 02/06/2024] [Accepted: 02/11/2024] [Indexed: 03/19/2024] Open
Abstract
BACKGROUND Decisions about driving for individuals living with dementia (ILWD) can be challenging. There are limited evidence-based person-centred interventions in the United Kingdom that support decisions about transitioning to not driving or guidelines for developing decision aids for ILWD. This study aimed to understand the important features of a decision aid through the cultural adaptation of Australian dementia and driving decision aid (DDDA) for ILWD residing in the United Kingdom. METHODS This qualitative study was theoretically underpinned by a person-centred framework and conducted over three stages: (1) Development of a draft UK-specific DDDA; (2) semistructured interviews with ILWD and an online survey with stakeholders to obtain their views on a draft UK DDDA and (3) content analysis and synthesis of qualitative data to inform the final version of the decision aid. RESULTS Eleven ILWD and six of their spouses participated in interviews, and 102 stakeholders responded to an online survey. The four broad features identified as important to include in a decision aid for drivers living with dementia were: a structured and interactive format; positive and supportive messaging and presentation; relevant and concise content and choice-centred. The perceived benefits of the decision aid were identified as supporting conversations, enhancing collaborative decision making and enabling agency with decisions about driving and future mobility options. CONCLUSIONS Decision aids that are underpinned by interactive choice-driven questions enhance a person-centred approach to decisions about driving. Positively framing decision aids through the presentation and content can facilitate engagement with the decision-making process about driving. The findings have implications for the development of decision aids designed for ILWD on other important health and social topics. PATIENT AND PUBLIC INVOLVEMENT Advocating for the development of a UK DDDA were ILWD. Healthcare professionals contributed to the development of a draft UK DDDA. Former and current drivers living with dementia, family members, healthcare professionals and other support networks of ILWD participated in interviews or an online survey which informed the final version of the UK DDDA.
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Affiliation(s)
- Nadine Veerhuis
- Aged, Dementia, Health Education and Research Centre, Faculty of Science Medicine and Health, School of NursingUniversity of WollongongWollongongNew South WalesAustralia
| | - Alessandra Merizzi
- Memory Assessment and Treatment ServicePennine Care National Health Service Foundation TrustOldhamUK
- Present address:
Research Department, Centre for Socio‐Economic Research on AgingNational Institute of Health and Science on Aging (INRCA)Via Santa Margherita, 5Ancona60124Italy
| | - Stephanie Papoulias
- Memory Assessment and Treatment ServicePennine Care National Health Service Foundation TrustOldhamUK
- Present address:
Sheffield Health and Social Care NHS Foundation Trust, Fulwood HouseOld Fulwood RoadSheffieldS10 3THUK
| | - Claire Bradbury
- Memory Assessment ServiceDorset Healthcare University Foundation Trust, Alderney HospitalPooleUK
| | - Kathy Sheret
- Memory Assessment ServiceDorset Healthcare University Foundation Trust, Alderney HospitalPooleUK
| | - Victoria Traynor
- Aged, Dementia, Health Education and Research Centre, Faculty of Science Medicine and Health, School of NursingUniversity of WollongongWollongongNew South WalesAustralia
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Su X, Ma S, Yang X, Zhang C, Chen W. Health Literacy Needs of Acute Pancreatitis Patients During the Diagnosis and Treatment Process Under the Lens of the Timing It Right Theory: A Qualitative Study. Patient Prefer Adherence 2024; 18:507-517. [PMID: 38433996 PMCID: PMC10906671 DOI: 10.2147/ppa.s444955] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/26/2023] [Accepted: 02/13/2024] [Indexed: 03/05/2024] Open
Abstract
Background The incidence and recurrence rate of acute pancreatitis (AP) continues to increase worldwide. The risk of AP attack and recurrence is closely related to the patient's health literacy. Previous studies have shown that AP patients had low levels of health literacy. Understanding patients' experience in AP's diagnosis and treatment process and their health literacy needs might significantly improve their health status. Objective This study aims to understand the experience of acute pancreatitis (AP) patients in the diagnostic and treatment process and explore their health literacy needs at various phases of this process. Methods This study utilized a qualitative approach based on Timing It Right theory. A purposive sampling strategy was employed to select 31 participants diagnosed with AP at various phases of the diagnosis and treatment process. These patients were selected from the Pancreatitis Treatment Centers of two tertiary hospitals in Eastern China. Subsequently, semi-structured in-depth interviews were conducted with the selected participants. The qualitative data was analyzed using the Colaizzi's method. Results The themes of AP patients' experiences and health literacy needs at various phases of the diagnosis and treatment process were presented as follows. 1. Diagnosis phase: inability to obtain disease information, psychological support seeking, and change unhealthy lifestyle; 2. Hospitalization phase: disease treatment information needs and medical professionals' healthcare. 3. Discharge Preparation phase: fear of recurrence, individualized healthy lifestyle instruction. 4. Home Recovery phase: self-management, continuous healthcare needs, and family support. Conclusion AP patients' HL needs and health-related problems vary during the diagnosis and treatment process. Medical professionals should comprehend AP patients' changing needs and individual differences, provide continuous healthcare, and involve families in patient management. These factors support patients' long-term self-management and preserve their overall health.
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Affiliation(s)
- Xia Su
- Hepatobiliary and Pancreatic Center, Clinical Medical College, Yangzhou University, Yangzhou, Jiangsu, People’s Republic of China
- School of Nursing & Public Health, Yangzhou University, Yangzhou, Jiangsu, People’s Republic of China
| | - Shuli Ma
- Department of Gastroenterology, Affiliated Hospital of Nantong University, Nantong, Jiangsu, People’s Republic of China
| | - Xiaoxi Yang
- School of Health and Wellness, Panzhihua University, Panzhihua, Sichuan, People’s Republic of China
| | - Can Zhang
- Hepatobiliary and Pancreatic Center, Clinical Medical College, Yangzhou University, Yangzhou, Jiangsu, People’s Republic of China
| | - Weiwei Chen
- Medical College of Yangzhou University, Yangzhou, Jiangsu, People’s Republic of China
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Kamil D, Wojcik KM, Smith L, Zhang J, Wilson OWA, Butera G, Jayasekera J. A Scoping Review of Personalized, Interactive, Web-Based Clinical Decision Tools Available for Breast Cancer Prevention and Screening in the United States. MDM Policy Pract 2024; 9:23814683241236511. [PMID: 38500600 PMCID: PMC10946080 DOI: 10.1177/23814683241236511] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/29/2023] [Accepted: 02/04/2024] [Indexed: 03/20/2024] Open
Abstract
Introduction. Personalized web-based clinical decision tools for breast cancer prevention and screening could address knowledge gaps, enhance patient autonomy in shared decision-making, and promote equitable care. The purpose of this review was to present evidence on the availability, usability, feasibility, acceptability, quality, and uptake of breast cancer prevention and screening tools to support their integration into clinical care. Methods. We used the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews Checklist to conduct this review. We searched 6 databases to identify literature on the development, validation, usability, feasibility, acceptability testing, and uptake of the tools into practice settings. Quality assessment for each tool was conducted using the International Patient Decision Aid Standard instrument, with quality scores ranging from 0 to 63 (lowest-highest). Results. We identified 10 tools for breast cancer prevention and 9 tools for screening. The tools included individual (e.g., age), clinical (e.g., genomic risk factors), and health behavior (e.g., alcohol use) characteristics. Fourteen tools included race/ethnicity, but no tool incorporated contextual factors (e.g., insurance, access) associated with breast cancer. All tools were internally or externally validated. Six tools had undergone usability testing in samples including White (median, 71%; range, 9%-96%), insured (99%; 97%-100%) women, with college education or higher (60%; 27%-100%). All of the tools were developed and tested in academic settings. Seven (37%) tools showed potential evidence of uptake in clinical practice. The tools had an average quality assessment score of 21 (range, 9-39). Conclusions. There is limited evidence on testing and uptake of breast cancer prevention and screening tools in diverse clinical settings. The development, testing, and integration of tools in academic and nonacademic settings could potentially improve uptake and equitable access to these tools. Highlights There were 19 personalized, interactive, Web-based decision tools for breast cancer prevention and screening.Breast cancer outcomes were personalized based on individual clinical characteristics (e.g., age, medical history), genomic risk factors (e.g., BRCA1/2), race and ethnicity, and health behaviors (e.g., smoking). The tools did not include contextual factors (e.g., insurance status, access to screening facilities) that could potentially contribute to breast cancer outcomes.Validation, usability, acceptability, and feasibility testing were conducted mostly among White and/or insured patients with some college education (or higher) in academic settings. There was limited evidence on testing and uptake of the tools in nonacademic clinical settings.
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Affiliation(s)
- 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, USA
| | - 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, USA
| | - Laney Smith
- Frederick P. Whiddon College of Medicine, Mobile, AL, 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, USA
| | - Gisela Butera
- Office of Research Services, National Institutes of Health Library, Bethesda, MD, 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, USA
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Guay-Bélanger S, Aubin E, Cimon M, Archambault P, Blanchette V, Giguere A, Gogovor A, Morin M, Ben Charif A, Ben Gaied N, Bickerstaff J, Chénard N, Emond J, Gilbert J, Violet I, Légaré F. Engagement of Older Adults Receiving Home Care Services and Their Caregivers in Health Decisions in Partnership With Clinical Teams: Protocol for a Multimethod Study to Prioritize and Culturally Adapt Decision Aids for Home Care. JMIR Res Protoc 2023; 12:e53150. [PMID: 37889512 PMCID: PMC10696497 DOI: 10.2196/53150] [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: 09/27/2023] [Revised: 10/20/2023] [Accepted: 10/23/2023] [Indexed: 10/28/2023] Open
Abstract
BACKGROUND Older adults (people aged 65 years and older) face many difficult decisions. Patient decision aids (PtDAs) can help them and their families make informed value-congruent decisions. Some PtDAs have been developed for the home care context, but little is known about scaling them for use with older adults in a different culture. OBJECTIVE This study aims to (1) assess the scalability of existing PtDAs for older adults in the home care context; (2) prioritize those that best match the decisional needs of older adults in home care; and (3) culturally adapt the prioritized PtDAs so they can be scaled successfully to the Quebec health care system. METHODS This multimethod study includes 3 phases. All phases will be overseen by a steering committee of older adults, caregivers, health professionals, decision makers, community organization representatives, and researchers with the needed expertise. In phase 1, we will use the Innovation Scalability Self-administered Questionnaire, a validated scalability self-assessment tool, to assess the scalability of 33 PtDAs previously identified in a systematic review. Based on their scalability, their quality (based on the International Patient Decision Aids Standards), and the importance of the decision point, we will retain approximately a third of these. In phase 2, we will conduct a 2-round web-based Delphi to prioritize the PtDAs selected in phase 1. Using a snowball recruitment strategy, we aim to recruit 60 Delphi participants in the province of Quebec, including older adults, caregivers, health professionals, decision makers involved in home care services, and PtDA experts. In the first round, we will ask participants to rate the importance of several PtDA decision points according to various criteria such as prevalence and difficulty on a 5-point Likert scale (1=not important to 5=very important). Approximately 6 of the highest-rated PtDAs will be retained for presentation in the second round, and we will select up to 3 PtDAs judged as having the highest priority for cultural adaptation. In phase 3, using the Chenel framework and user-centered design methods, we will update and adapt the PtDAs to the Quebec health care system and integrate these PtDAs into an interprofessional shared decision-making training program for home care teams. The adapted PtDAs will respect the International Patient Decision Aids Standards criteria. RESULTS This study was funded in March 2022 by the Canadian Institutes of Health Research. Data collection for the web-based Delphi began in October 2023. Results are expected to be published in May 2024. CONCLUSIONS This project will provide relevant and culturally appropriate decision support tools for older adults making difficult decisions and their home care teams that will be ready for scaling across the province of Quebec. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) PRR1-10.2196/53150.
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Affiliation(s)
- Sabrina Guay-Bélanger
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
| | - Emmanuelle Aubin
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
| | - Marie Cimon
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
| | - Patrick Archambault
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
- Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Université Laval, Quebec, QC, Canada
- Centre de recherche intégrée pour un système apprenant en santé et services sociaux, Centre intégré de santé et de services sociaux de Chaudière-Appalaches, Lévis, QC, Canada
- Department of Anesthesiology and Intensive Care, Université Laval, Quebec, QC, Canada
| | - Virginie Blanchette
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
- Department of Human Kinetics and Podiatric Medicine, Université du Québec à Trois-Rivières, Trois-Rivières, QC, Canada
| | - Anik Giguere
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
- Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Université Laval, Quebec, QC, Canada
| | - Amédé Gogovor
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
- Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Université Laval, Quebec, QC, Canada
| | - Michèle Morin
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
- Centre de recherche intégrée pour un système apprenant en santé et services sociaux, Centre intégré de santé et de services sociaux de Chaudière-Appalaches, Lévis, QC, Canada
- Department of Medicine, Faculty of Medicine, Université Laval, Quebec, QC, Canada
| | | | | | | | - Nancy Chénard
- Centre intégré de santé et de services sociaux de Chaudière-Appalaches, Lévis, QC, Canada
| | - Julie Emond
- Centre intégré de santé et de services sociaux de Chaudière-Appalaches, Lévis, QC, Canada
| | - Julie Gilbert
- Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
| | - Isabelle Violet
- Ministère de la santé et des services sociaux du Québec, Quebec, QC, Canada
| | - France Légaré
- VITAM - Centre de recherche en santé durable, Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale, Quebec, QC, Canada
- Department of Family Medicine and Emergency Medicine, Faculty of Medicine, Université Laval, Quebec, QC, Canada
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Masterson Creber R, Benda N, Dimagli A, Myers A, Niño de Rivera S, Omollo S, Sharma Y, Goyal P, Turchioe MR. Using Patient Decision Aids for Cardiology Care in Diverse Populations. Curr Cardiol Rep 2023; 25:1543-1553. [PMID: 37943426 PMCID: PMC10914300 DOI: 10.1007/s11886-023-01953-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 08/25/2023] [Indexed: 11/10/2023]
Abstract
PURPOSE OF REVIEW Patient decision aids (PDAs) are tools that help guide treatment decisions and support shared decision-making when there is equipoise between treatment options. This review focuses on decision aids that are available to support cardiac treatment options for underrepresented groups. RECENT FINDINGS PDAs have been developed to support multiple treatment decisions in cardiology related to coronary artery disease, valvular heart disease, cardiac arrhythmias, heart failure, and cholesterol management. By considering the unique needs and preferences of diverse populations, PDAs can enhance patient engagement and promote equitable healthcare delivery in cardiology. In this review, we examine the benefits, challenges, and current trends in implementing PDAs, with a focus on improving decision-making processes and outcomes for patients from underrepresented racial and ethnic groups. In addition, the article highlights key considerations when implementing PDAs and potential future directions in the field.
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Affiliation(s)
- Ruth Masterson Creber
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA.
| | - Natalie Benda
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
| | - Arnaldo Dimagli
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
| | - Annie Myers
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
| | - Stephanie Niño de Rivera
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
| | - Shalom Omollo
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
| | - Yashika Sharma
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
| | | | - Meghan Reading Turchioe
- Columbia University School of Nursing, Columbia University Irving Medical Center, 560 W 168th St, New York, NY, 10032, USA
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11
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Li X, Yang D, Meng M, Zhao J, Yin Y, Wang H, Zhang X, Liu Q, Li M, Liu J, Hao Y. Shared decision-making in healthcare in mainland China: a scoping review. Front Public Health 2023; 11:1162993. [PMID: 37744479 PMCID: PMC10513465 DOI: 10.3389/fpubh.2023.1162993] [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: 02/10/2023] [Accepted: 08/22/2023] [Indexed: 09/26/2023] Open
Abstract
Background Shared decision-making (SDM) facilitates the participation of healthcare professionals and patients in treatment decisions. We conducted a scoping review to assess SDM's current status in mainland China, referencing the Ottawa Decision Support Framework (ODSF). Methods Our review encompassed extensive searches across six English and four Chinese databases, and various gray literature until April 30, 2021. Results were synthesized using thematic analysis. Results Out of the 60 included studies, we identified three key themes based on the ODSF framework: decisional needs, decision support, and decisional outcomes. However, there appears to be a lack of comprehensive understanding of concepts related to decisional needs in China. Only a few studies have delved into feasibility, preference, choice, and outcome factors in the SDM process. Another challenge emerges from an absence of uniform standards for developing patient decision aids (PDAs). Furthermore, regarding health outcome indicators, their predominant focus remains on physiological needs. Conclusion SDM is in its infancy in mainland China. It is important to explore the concept and expression of decisional needs in the context of Chinese culture. Subsequent studies should focus on constructing a scientifically rigorous and systematic approach for the development of PDAs, and considering the adaptation of SDM steps to the clinical context in China during SDM implementation. Concurrently, The focus on health outcomes in Chinese SDM studies, driven by the unique healthcare resource landscape, underscores the necessity of prioritizing basic needs within limited resources. Systematic review registration https://inplasy.com/?s=202130021.
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Affiliation(s)
- Xuejing Li
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
| | - Dan Yang
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
| | - Meiqi Meng
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
| | - Junqiang Zhao
- School of Nursing, University of Ottawa, Ottawa, ON, Canada
- Center for Research on Health and Nursing, University of Ottawa, Ottawa, ON, Canada
| | - Yiyi Yin
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
| | - Hefang Wang
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
| | - Xiaoyan Zhang
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
| | - Qian Liu
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
| | - Mengdi Li
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
| | - Jianping Liu
- Center for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, China
| | - Yufang Hao
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
- Beijing University of Chinese Medicine Collaborating Center of Joanna Briggs Institute, Beijing, China
- Beijing University of Chinese Medicine Best Practice Spotlight Organization, Beijing, China
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12
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Liu YQ, Guo YL, Xu J, Geng WJ, Li ZZ, Jia M, Liu YD, Zhao H. Shared Decision-Making in Hemophilic Arthropathy Rehabilitation: A Qualitative Study. Patient Prefer Adherence 2023; 17:249-257. [PMID: 36721389 PMCID: PMC9884430 DOI: 10.2147/ppa.s394095] [Citation(s) in RCA: 6] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/20/2022] [Accepted: 01/11/2023] [Indexed: 01/26/2023] Open
Abstract
Purpose To probe into the needs and barriers underlying patients' participation in shared decision-making related to rehabilitation nursing for hemophilic arthropathy. Patients and Methods The phenomenological research approach was adopted to conduct a series of semi-structured, in-depth interviews with 15 patients with hemophilic arthropathy undergoing rehabilitative treatments, 10 caregivers, and 7 healthcare providers from a hemophilia treatment center in Shanxi province, China. Colaizzi's seven-step method of data analysis was applied to organize, analyze, and extract the themes from the interview materials. Results Three main themes emerged from the analysis: the status quo of the healthcare system (insufficient decision support systems and mismatch between healthcare providers' and patients' resources), circumstances of provider-patient interactions (lack of information exchange and unbalanced power structure between healthcare providers and patients), and patient-related factors influencing participation in decision-making (lack of self-efficacy, personal characteristics, family and social decision support, and attitude toward participation in decision-making). Conclusion Participation in rehabilitation decision-making among patients with hemophilic arthropathy is affected by multiple barriers. Healthcare professionals should improve their understanding of shared decision-making, offer patients active guidance on participating in the decision-making process, prioritize their affective needs, and formulate professional and effective solutions to support shared decision-making as early as possible.
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Affiliation(s)
- Yan-Qiu Liu
- College of Nursing, Shanxi University of Chinese Medicine, Jinzhong, Shanxi, People’s Republic of China
| | - Yu-Lin Guo
- Department of Rehabilitation, The Second Hospital of Shanxi Medical University, Taiyuan, Shanxi, People’s Republic of China
| | - Jia Xu
- Department of Nephrology, Shanxi Bethune Hospital, Taiyuan, Shanxi, People’s Republic of China
| | - Wen-Jing Geng
- College of Nursing, Shanxi University of Chinese Medicine, Jinzhong, Shanxi, People’s Republic of China
| | - Zhen-Zhen Li
- Department of Hematology, The Second Hospital of Shanxi Medical University, Taiyuan, Shanxi, People’s Republic of China
| | - Ming Jia
- College of Nursing, Shanxi University of Chinese Medicine, Jinzhong, Shanxi, People’s Republic of China
| | - Yu-Dan Liu
- College of Nursing, Shanxi University of Chinese Medicine, Jinzhong, Shanxi, People’s Republic of China
| | - Hua Zhao
- College of Nursing, Shanxi University of Chinese Medicine, Jinzhong, Shanxi, People’s Republic of China
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Pei Y, Qi X, Schulman-Green D, Hu M, Wang K, Wu B. Decision Aid Interventions for Family Caregivers of Persons With Advanced Dementia in Decision-Making About Feeding Options: A Scoping Review. J Am Med Dir Assoc 2022; 23:1927.e1-1927.e6. [PMID: 36150408 PMCID: PMC10421649 DOI: 10.1016/j.jamda.2022.08.014] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/24/2022] [Revised: 08/02/2022] [Accepted: 08/20/2022] [Indexed: 12/15/2022]
Abstract
OBJECTIVES We provided an overview of the literature on decision aid interventions for family caregivers of older adults with advanced dementia regarding decision making about tube feeding. We synthesized (1) the use of theory during the development, implementation, and evaluation of decision aids; (2) the development, content, and delivery of decision aid interventions; (3) caregivers' experience with decision aid interventions; and (4) the effect of decision aid interventions on caregivers' quality of decision-making about feeding options. DESIGN Scoping review. METHODS We conducted a scoping review of peer-reviewed studies published January 1, 2000-June 30, 2022, in MEDLINE, EMBASE, The Cochrane Library, CINAHL, and Web of Science databases. The process was guided by Arksey and O'Malley's methodological framework, which includes identifying the research question, choosing related studies, charting the data, and summarizing results. Empirical articles concerning the decision aid interventions about feeding options were selected. RESULTS Six publications reporting 4 unique decision aid interventions were included. All the interventions targeted caregivers of older adults with advanced dementia. Three decision aids were culturally adapted from existing decision aids. The Ottawa Decision Support Framework and the International Patient Decision Aid Standards Framework were used in these 6 publications. Interventions aimed to improve decision making regarding tube feeding for caregivers through static delivery methods. Caregivers rated these decision aids as helpful and acceptable. Decisional conflict and knowledge of feeding options were the most common outcomes evaluated. Reduction in decisional conflict and increase in knowledge were consistently found among dementia caregivers, but no intervention effects were found on preferences for the use of tube feeding. CONCLUSIONS AND IMPLICATIONS Decision aid interventions effectively improve decision-making regarding tube feeding among the target population. Cultural adaptation of an existing decision aid intervention is the main strategy. However, the lack of guidance of a cultural adaptation framework in this process may lead to difficulties explaining caregivers' behavioral changes. Moreover, merely providing information is not enough to change caregivers' preferences or behavior of use of tube feeding. A systematic approach to cultural adaptation and interactive intervention is needed in future studies.
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Affiliation(s)
- Yaolin Pei
- Rory Meyers College of Nursing, New York University, New York, NY, USA
| | - Xiang Qi
- Rory Meyers College of Nursing, New York University, New York, NY, USA
| | | | - Mengyao Hu
- Rory Meyers College of Nursing, New York University, New York, NY, USA
| | - Kaipeng Wang
- Graduate School of Social Work, University of Denver, Denver, CO, USA
| | - Bei Wu
- Rory Meyers College of Nursing, New York University, New York, NY, USA.
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Song K, Wu D. Shared decision-making in the management of patients with inflammatory bowel disease. World J Gastroenterol 2022; 28:3092-3100. [PMID: 36051346 PMCID: PMC9331519 DOI: 10.3748/wjg.v28.i26.3092] [Citation(s) in RCA: 33] [Impact Index Per Article: 11.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/16/2022] [Revised: 04/21/2022] [Accepted: 06/20/2022] [Indexed: 02/06/2023] Open
Abstract
The rapid progress of research into inflammatory bowel disease (IBD) has resulted in increasingly more treatment options. Different options have different advantages and disadvantages, and the preferences of patients may also differ. If patients can be invited to the formulation of medical decision-making, their compliance and satisfaction would be improved, thus possibly achieving better therapeutic results. The present review aims to summarize the current literature on shared decision-making (SDM) in the management of IBD, with the goal of promoting the application of SDM.
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Affiliation(s)
- Kai Song
- Department of Gastroenterology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences, Peking Union Medical College, Beijing 100730, China
| | - Dong Wu
- Department of Gastroenterology, State Key Laboratory of Complex Severe and Rare Diseases, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences, Peking Union Medical College, Beijing 100730, China
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Riganti P, Victor Ariel Franco J, Victoria Ruiz Yanzi M, Carrara C, Barani M, Kopitowski K. Shared decision-making in Argentina in 2022. ZEITSCHRIFT FUR EVIDENZ, FORTBILDUNG UND QUALITAT IM GESUNDHEITSWESEN 2022; 171:11-14. [PMID: 35610137 DOI: 10.1016/j.zefq.2022.04.008] [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: 03/30/2022] [Revised: 04/11/2022] [Accepted: 04/15/2022] [Indexed: 06/15/2023]
Abstract
Argentina is an upper-middle income country located in South America with an estimated population of 46.2 million inhabitants. There is no unified research agenda or government initiatives encouraging the implementation and research of Shared Decision-Making (SDM). Our working group at the Family and Community Medicine Division of the Hospital Italiano de Buenos Aires is the leading centre for research and implementation of SDM in the country. The implementation strategy is articulated in undergraduate, postgraduate and continuous medical education. However, it is challenged by the professionals' perception that they are already doing it or lack time during consultations. We have advanced research to understand how to adapt tools to measure and implement SDM in our settings. Still, we face additional challenges related to funding, accessing diverse populations beyond the reach of our institution and incorporating patients in the co-production of research. While most of our efforts arise from the voluntary work of our healthcare professionals, we believe this is a strength since SDM research and implementation are then directly linked to patient care.
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Affiliation(s)
- Paula Riganti
- Family and Community Medicine Division, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina.
| | - Juan Victor Ariel Franco
- Family and Community Medicine Division, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina
| | | | - Carolina Carrara
- Family and Community Medicine Division, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina
| | - Mariela Barani
- Family and Community Medicine Division, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina
| | - Karin Kopitowski
- Family and Community Medicine Division, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina
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16
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Plaisance A, Skrobik Y, Moreau M, Pageau F, Tapp D, Heyland DK. Cultural adaptation of a community-based advance serious illness planning decision aid to the Quebec context involving end-users. Health Expect 2022; 25:1016-1028. [PMID: 35112442 PMCID: PMC9122389 DOI: 10.1111/hex.13447] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/24/2021] [Revised: 12/28/2021] [Accepted: 01/18/2022] [Indexed: 12/16/2022] Open
Abstract
INTRODUCTION Traditional advance care planning focuses on end-of-life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the 'death' outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French-speaking Canadian province. METHODS We engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified. RESULTS We engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating 'getting the medical care that's right for you' when referring to the PWG's goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term 'machines' to describe life-sustaining treatments was also deliberated. CONCLUSION Our collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user-friendly this French adaptation of the PWG is in various Canadian French-speaking environments requires further study. CONTRIBUTION We organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.
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Affiliation(s)
| | - Yoanna Skrobik
- Faculty of MedicineMcGill UniversityMontrealQuebecCanada
| | - Mathieu Moreau
- Centre Intégré Universitaire de Santé et de Services Sociaux du Nord‐de‐l'Île‐de‐MontréalMontrealQuebecCanada
- Centre Intégré de Santé et de Services Sociaux de LavalLavalQuebecCanada
- Department of Family Medicine and Emergency MedicineFaculty of Medicine, University of MontrealMontrealQuebecCanada
| | - Felix Pageau
- Faculty of NursingLaval UniversityQuebec CityQuebecCanada
- VITAM Research Center on Sustainable Health, Quebec Integrated University Health and Social Services Center (CIUSSS de la Capitale‐Nationale)Quebec CityQuebecCanada
- Faculty of MedicineUniversity LavalQuebec CityQuebecCanada
| | - Diane Tapp
- Faculty of NursingLaval UniversityQuebec CityQuebecCanada
- Research CenterInstitut Universitaire de Cardiologie et de Pneumologie de Québec (IUCPQ)Quebec CityQuebecCanada
| | - Daren K. Heyland
- Department of Critical Care MedicineQueen's UniversityKingstonOntarioCanada
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Ospina NMS, Bagautdinova D, Hargraves I, Barb D, Subbarayan S, Srihari A, Wang S, Maraka S, Bylund C, Treise D, Montori V, Brito JP. Development and pilot testing of a conversation aid to support the evaluation of patients with thyroid nodules. Clin Endocrinol (Oxf) 2022; 96:627-636. [PMID: 34590734 PMCID: PMC8897203 DOI: 10.1111/cen.14599] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/15/2021] [Revised: 08/25/2021] [Accepted: 09/09/2021] [Indexed: 11/27/2022]
Abstract
OBJECTIVE To support patient-centred care and the collaboration of patients and clinicians, we developed and pilot tested a conversation aid for patients with thyroid nodules. DESIGN, PATIENT AND MEASUREMENTS We developed a web-based Thyroid NOdule Conversation aid (TNOC) following a human-centred design. A proof of concept observational pre-post study was conducted (TNOC vs. usual care [UC]) to assess the impact of TNOC on the quality of conversations. Data sources included recordings of clinical visits, post-encounter surveys and review of electronic health records. Summary statistics and group comparisons are reported. RESULTS Sixty-five patients were analysed (32 in the UC and 33 in the TNOC cohort). Most patients were women (89%) with a median age of 57 years and were incidentally found to have a thyroid nodule (62%). Most thyroid nodules were at low risk for thyroid cancer (71%) and the median size was 1.4 cm. At baseline, the groups were similar except for higher numeracy in the TNOC cohort. The use of TNOC was associated with increased involvement of patients in the decision-making process, clinician satisfaction and discussion of relevant topics for decision making. In addition, decreased decisional conflict and fewer thyroid biopsies as the next management step were noted in the TNOC cohort. No differences in terms of knowledge transfer, length of consultation, thyroid cancer risk perception or concern for thyroid cancer diagnosis were found. CONCLUSION In this pilot observational study, using TNOC in clinical practice was feasible and seemed to help the collaboration of patients and clinicians.
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Affiliation(s)
- Naykky M Singh Ospina
- Division of Endocrinology, Department of Medicine, University of Florida, Gainesville, FL
| | | | - Ian Hargraves
- Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester MN, USA
| | - Diana Barb
- Division of Endocrinology, Department of Medicine, University of Florida, Gainesville, FL
| | - Sreevidya Subbarayan
- Division of Endocrinology, Department of Medicine, University of Florida, Gainesville, FL
| | - Ashok Srihari
- Division of Endocrinology, Department of Medicine, University of Florida, Gainesville, FL
| | - Shu Wang
- University of Florida Health Cancer Center & Department of Biostatistics, University of Florida
| | - Spyridoula Maraka
- Division of Endocrinology and Metabolism, University of Arkansas for Medical Sciences, Little Rock, AR
- Central Arkansas Veterans Healthcare System, Little Rock, AR
| | - Carma Bylund
- College of Journalism & Communications, University of Florida, Gainesville, FL
| | - Debbie Treise
- College of Journalism & Communications, University of Florida, Gainesville, FL
| | - Victor Montori
- Knowledge and Evaluation Research Unit in Endocrinology (KER_Endo), Mayo Clinic, Rochester, MN
| | - Juan P Brito
- Knowledge and Evaluation Research Unit in Endocrinology (KER_Endo), Mayo Clinic, Rochester, MN
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Alarcon-Ruiz CA, Zafra-Tanaka JH, Diaz-Barrera ME, Becerra-Chauca N, Toro-Huamanchumo CJ, Pacheco-Mendoza J, Taype-Rondan A, De La Cruz-Vargas JA. Effects of decision aids for depression treatment in adults: systematic review. BJPsych Bull 2022; 46:42-51. [PMID: 33371926 PMCID: PMC8914992 DOI: 10.1192/bjb.2020.130] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/23/2022] Open
Abstract
AIM AND METHOD To determine the effect on decisional-related and clinical outcomes of decision aids for depression treatment in adults in randomised clinical trials. In January 2019, a systematic search was conducted in five databases. Study selection and data extraction were performed in duplicate. Meta-analyses were performed, and standardised and weighted mean differences were calculated, with corresponding 95% confidence intervals. The certainty of the evidence was evaluated with GRADE methodology. RESULTS Six randomised clinical trials were included. The pooled estimates showed that decision aids for depression treatment had a beneficial effect on patients' decisional conflict, patient knowledge and information exchange between patient and health professional. However, no statistically significant effect was found for doctor facilitation, treatment adherence or depressive symptoms. The certainty of the evidence was very low for all outcomes. CLINICAL IMPLICATIONS Using decision aids to choose treatment in patients with depression may have a a beneficial effect on decisional-related outcomes, but it may not translate into an improvement in clinical outcomes.
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Affiliation(s)
- Christoper A Alarcon-Ruiz
- Faculty of Human Medicine, Ricardo Palma University, Peru.,Institute for Research in Biomedical Sciences, Ricardo Palma University, Peru
| | | | - Mario E Diaz-Barrera
- SOCEMUNT Scientific Society of Medical Students, National University of Trujillo, Peru
| | | | - Carlos J Toro-Huamanchumo
- Research Unit for Generation and Synthesis Evidence in Health, Saint Ignacio of Loyola University, Peru.,Multidisciplinary Research Unit, Avendaño Medical Center, Peru
| | | | - Alvaro Taype-Rondan
- Research Unit for Generation and Synthesis Evidence in Health, Saint Ignacio of Loyola University, Peru
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Tamizifar B, Ehsani M, Farzi S, Adibi P, Taleghani F, Farzi S, Shahriari M, Moladoost A. Development of a Patient Decision Aid to Help People Living with Inflammatory Bowel Disease. Middle East J Dig Dis 2022; 14:57-63. [PMID: 36619728 PMCID: PMC9489324 DOI: 10.34172/mejdd.2022.256] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/15/2021] [Accepted: 10/22/2021] [Indexed: 01/11/2023] Open
Abstract
BACKGROUND: Patient decision aid (PDA) is a tool, which helps the improvement of shared decisionmaking and is a part of the paradigm shift from physician-centered decisions to patient-centered shared decision making. In this study, we aimed to describe the process used to develop a PDA for facilitating shared decision-making about treatment in patients with inflammatory bowel disease (IBD) who need medication (corticosteroid, azathioprine, anti-TNF, and infliximab) or surgery. METHODS: The development process of PDA included: 1) The development of a prototype based on literature review and interview 2) 'Alpha' testing with patients and clinicians 3) 'Beta' testing in real conditions and 4) The production of a final version. This process took about 12 months (2019-2020). The participants were adult patients with IBD, gastroenterologists, and nurses. RESULTS: The final PDA contains four important sections: 1) Introduction about IBD disease, the purpose of developing PDA, and emphasis on shared decision-making 2) Benefits and risks of main medicines 3) The success rate as well as the incidence of complications after surgery, and 4) The conclusion about patients' satisfaction with PDA to choose the treatment options. Besides, PDA evaluation in the real world setting showed that 100% of physicians (n=4) and 86% of patients (n=12) were completely satisfied with the content of the PDA and considered it applicable and useful. CONCLUSION: This PDA can help patients participate in the shared decision-making process and select the best medical and surgical treatment methods. The feedback received from clinicians and patients showed their satisfaction with using the PDA.
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Affiliation(s)
- Babak Tamizifar
- Assistant Professor, Department of Internal Medicine, School of Medicine, Khorshid Hospital, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Maryam Ehsani
- Assistant Professor, Nursing Care Research center, Faculty of Nursing & Midwifery, Iran University of Medical Sciences, Tehran, Iran
| | - Sedigheh Farzi
- Assistant Professor, Nursing and Midwifery Care Research Center, Department of Adult Health Nursing, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran,Corresponding Author: Sedigheh Farzi, PhD, Hezar Jerib St, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran. Postal code: 8174673461 Tel:+98 3137927589 Fax:+98 3136699398
| | - Peyman Adibi
- Professor, Department of Internal Medicine, School of Medicine, Integrative Functional Gastroenterology Research Al-Zahra Hospital, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Fariba Taleghani
- Professor, Nursing and Midwifery Care Research Centre, Department of Adult Health Nursing, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Saba Farzi
- PhD Candidate of Nursing, Student Research Center, Faculty of Nursing & Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Mohsen Shahriari
- Professor, Nursing and Midwifery Care Research Center, Department of Adult Health Nursing, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran
| | - Azam Moladoost
- MSc of Nursing, Feiz Hospital, Isfahan University of Medical Sciences, Isfahan, Iran
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Gagné M, Lam Shin Cheung J, Kouri A, FitzGerald JM, O'Byrne PM, Boulet LP, Grill A, Gupta S. A patient decision aid for mild asthma: Navigating a new asthma treatment paradigm. Respir Med 2021; 201:106568. [PMID: 34429221 DOI: 10.1016/j.rmed.2021.106568] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/11/2021] [Revised: 07/26/2021] [Accepted: 08/06/2021] [Indexed: 01/22/2023]
Abstract
INTRODUCTION In mild asthma, as-needed budesonide-formoterol offers similar protection from severe exacerbations as daily inhaled corticosteroids (ICS), with lower ICS exposure but slightly increased symptoms. We sought to develop an electronic decision aid to guide discussions about the pros and cons of these first-line options, while identifying and integrating user preferences. METHODS Following International Patient Decision Aid Standards, we created a mild asthma decision aid prototype comparing convenience, clinical outcomes, cumulative ICS dose exposure, costs, and side-effects of each option. After face validation, the prototype was iteratively adapted through rapid-cycle development. Each cycle consisted of a patient focus group and a primary care physician interview. We made user preference-based improvements after each round, until reaching a pre-set stopping criterion (no new critical issues identified). We then performed a summative qualitative content analysis. RESULTS Over 5 cycles, we recruited 21 asthma patients (12/21 women, 10/21 ≥ 60 years old) and 5 physicians. Serial changes included simplification and reduction of text and reading level, inclusion of an ICS "myths" section and elaboration of patient-friendly infographics for numerical comparisons. User preferences fell within Content, Format, and tool use Process themes. In response to decision-making preferences, we created a complementary one-page conversation aid for patient-provider use at the point-of-care. CONCLUSIONS We present preference-based electronic patient decision and conversation aids for treatment of mild asthma. Our user preference analyses offer useful insights for development of such tools in other chronic diseases. These tools now require integration into point-of-care workflows for measurement of real-world uptake and impact.
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Affiliation(s)
- Myriam Gagné
- Division of Respirology, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
| | | | - Andrew Kouri
- Division of Respirology, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
| | - J Mark FitzGerald
- Centre for Lung Health, Vancouver Coastal Health Research Institute, Vancouver, BC Canada; University of British Columbia, Vancouver, BC Canada.
| | - Paul M O'Byrne
- Firestone Institute for Respiratory Health, St Joseph's Healthcare, Hamilton, ON, Canada; Department of Medicine, Michael G. DeGroote School of Medicine, McMaster University, Hamilton, ON, Canada.
| | - Louis-Philippe Boulet
- Institut universitaire de cardiologie et de pneumologie de Québec-Université Laval, Québec, QC, Canada; Faculté de Médecine, Université Laval, Québec, QC, Canada.
| | - Allan Grill
- Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
| | - Samir Gupta
- Division of Respirology, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada; Department of Medicine, University of Toronto, Toronto, ON, Canada; Keenan Research Centre for Biomedical Science, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
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21
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Tan NQP, Volk RJ. Addressing disparities in patients' opportunities for and competencies in shared decision making. BMJ Qual Saf 2021; 31:75-78. [PMID: 34162755 DOI: 10.1136/bmjqs-2021-013533] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/15/2021] [Indexed: 12/26/2022]
Affiliation(s)
- Naomi Q P Tan
- Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA
| | - Robert J Volk
- Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA
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22
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Derech RD, Neves FS. Cross-cultural adaptation and content validity of the the patient decision aid "Making Choices: Feeding Options for Patients with Dementia" to Brazilian Portuguese language. Codas 2021; 33:e20200044. [PMID: 34105615 DOI: 10.1590/2317-1782/20192020044] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/19/2020] [Accepted: 06/17/2020] [Indexed: 11/22/2022] Open
Abstract
PURPOSE Cross-cultural adaptation to Brazilian Portuguese and evaluation of content validity of a patient decision aid to help in choosing the feeding route for patients with severe dementia entitled "Making Choices: Feeding Options for Patients with Dementia". METHODS The cross-cultural adaptation involved two independent translations, synthesis of translations, two independent back-translations, their synthesis, and pretest with 30 caregivers. Content validation was based on analyzes of 35 Brazilian specialists (physicians, speech-language therapists and nurses experienced in caring for patients with severe dementia) through measures of content validity index and concordance between multiple judges by Fleiss' kappa. RESULTS The level of comprehension of the instrument by caregivers in the pretest was almost perfect. The specialists committee considered the contents of the instrument valid, in a statistically significant way. CONCLUSION The patient decision aid in Brazilian Portuguese entitled "Fazendo escolhas: opções de alimentação para pacientes com demência" obtained evidence of cross-cultural equivalence and content validity for use in the Brazilian population. Further studies are needed to assess its effects on the decision-making process in our population.
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Affiliation(s)
- Rodrigo D'Agostini Derech
- Programa de Pós-graduação em Ciências Médicas, Centro de Ciências da Saúde, Universidade Federal de Santa Catarina - UFSC - Florianópolis (SC), Brasil
| | - Fabricio Souza Neves
- Departamento de Clínica Médica, Centro de Ciências da Saúde, Universidade Federal de Santa Catarina - UFSC - Florianópolis (SC), Brasil
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Zheng LF, Ngoh SHA, Ng JYX, Tan NC. Clinician perspectives on a culturally adapted patient decision aid concerning maintenance therapy for asthma. J Asthma 2021; 59:1463-1472. [PMID: 33926335 DOI: 10.1080/02770903.2021.1923736] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/21/2022]
Abstract
BACKGROUND AND OBJECTIVE Patients with persistent asthma often show poor adherence to inhaled corticosteroids (ICS). Shared decision-making can improve adherence rates in this population. Patient decision aids (PDAs) are tools to facilitate shared decision-making. To date, only one PDA, developed in a Canadian French-speaking population, exists for patients considering ICS maintenance therapy. This PDA has been culturally adapted in this study to contextualize to the needs of multi-ethnic Asian patients in Singapore. This study explored the views of local clinicians on the content, design and implementation of this newly-adapted PDA. METHODS 24 clinicians, who were purposively sampled from polyclinics and a tertiary institution, were interviewed on the content, design and implementation of the PDA. The interviews were audio-recorded, transcribed and analyzed via thematic analysis. RESULTS Clinicians generally accepted the design of the PDA. They suggested for the target users to be patients on Step 2 of GINA guidelines and the number of options to be reduced from four to two (do nothing or start inhaled corticosteroids). Moreover, they supported including a list of values for patients to select from given that Asian patients often do not articulate their values readily. The addition of more visual aids, the production of multilingual Asian editions and the involvement of nurses to administer the PDA was also suggested. CONCLUSION The PDA was culturally-adapted with local clinicians' perspectives to target multi-ethnic Asian patients with persistent asthma (Step 2 GINA guidelines). The main changes include a list of values and addition of visual aids.
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Affiliation(s)
- L F Zheng
- SingHealth Polyclinics, Singapore, Singapore.,SingHealth-Duke NUS Family Medicine Academic Clinical Programme, Singapore, Singapore
| | - S H A Ngoh
- SingHealth Polyclinics, Singapore, Singapore
| | - J Y X Ng
- Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
| | - N C Tan
- SingHealth Polyclinics, Singapore, Singapore.,SingHealth-Duke NUS Family Medicine Academic Clinical Programme, Singapore, Singapore
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24
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Meyappan M, Loh WSA, Tan LY, Tan SFI, Ho PY, Poh YJ, Tan NC. Development of a novel gout treatment patient decision aid by patient and physician: A qualitative research study. Health Expect 2021; 24:431-443. [PMID: 33434401 PMCID: PMC8077153 DOI: 10.1111/hex.13184] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/05/2020] [Revised: 11/26/2020] [Accepted: 12/03/2020] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Gout treatment is not optimized globally, often due to therapeutic inertia by physicians or poor adherence to urate-lowering medications by patients. A patient decision aid (PDA) to facilitate shared decision making (SDM) in gout treatment may overcome these physician-patient barriers. OBJECTIVE The study explored the views of physicians and patients on a novel locally designed gout treatment PDA prototype. DESIGN Qualitative descriptive design was used to gather data from in-depth-interviews (IDI) and focus group discussions (FGD). Data analysis was via thematic analysis. Emergent themes shaped a revised version of the PDA. SETTING AND PARTICIPANTS Adult Asian patients with recent acute gout exacerbations and local Primary Care Physicians (PCP) in Singapore were purposefully chosen. 15 patients with gout and 11 PCPs participated across three IDIs and six FGDs, with the investigators exploring their views of a prototype gout treatment PDA. RESULTS Patients and physicians generally concurred with the content and design of the PDA prototype. However, while patients preferred fewer treatment details, the PCPs desired more information. Patients preferred the display of statistics, while PCPs felt that numbers were not relevant to patients. The latter were hesitant to include treatment options that were unavailable in primary care. Both stakeholders indicated that they would use the PDA during a consultation. PCPs would need further training in SDM, given a lack of understanding of it. CONCLUSION AND PATIENT CONTRIBUTION Patients will be the prime users of the PDA. While their views differed partially from the physicians, both have jointly developed the novel gout treatment PDA.
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Affiliation(s)
| | - Wei Siong Aaron Loh
- Yong Loo Lin School of MedicineNational University of SingaporeSingapore CitySingapore
| | - Li Yen Tan
- SingHealth PolyclinicsSingapore CitySingapore
| | | | - Pey Ying Ho
- SingHealth PolyclinicsSingapore CitySingapore
| | - Yih Jia Poh
- Rheumatology DepartmentSingapore General HospitalSingapore CitySingapore
| | - Ngiap Chuan Tan
- SingHealth PolyclinicsSingapore CitySingapore
- SingHealth‐Duke NUS Family Medicine Academic Clinical ProgrammeSingapore CitySingapore
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Ng CJ, Lee PY. Practising shared decision making in primary care. MALAYSIAN FAMILY PHYSICIAN : THE OFFICIAL JOURNAL OF THE ACADEMY OF FAMILY PHYSICIANS OF MALAYSIA 2021; 16:2-7. [PMID: 33948136 PMCID: PMC8088742 DOI: 10.51866/cm0001] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/12/2023]
Abstract
Making healthcare decisions collaboratively between patients and doctors can be challenging in primary care, as clinical encounters are often short. Conflicts between patients and doctors during the decision-making process may affect both patient and doctor satisfaction and result in medico-legal consequences. With the increasing recognition of the importance of patient empowerment, shared decision making (SDM) can serve as a practical consultation model for primary care doctors (PCDs) to guide patients in making informed healthcare choices. Although more research is needed to find effective ways to implement SDM in the real world, the 6-step approach presented in this paper can guide PCDs to practise SDM in their daily practice. Implementation of SDM can be further enhanced by incorporating SDM training into undergraduate and postgraduate curricula and using evidence-based tools such as patient decision aids.
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Affiliation(s)
- Chirk Jenn Ng
- MBBS, MMed Family Med, PhD, Department of Primary Care Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia,
| | - Ping Yein Lee
- MBBS, MMed Family Med, Department of Family Medicine, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, Serdang, Malaysia
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26
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Yuen SWJ, Tay TY, Gao N, Tho NQ, Tan NC. Development of a decision aid to support colorectal cancer screening: perspectives of Asians in an endemic urban community-a qualitative research study. BMC Med Inform Decis Mak 2021; 21:86. [PMID: 33676504 PMCID: PMC7936439 DOI: 10.1186/s12911-021-01404-1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2020] [Accepted: 01/20/2021] [Indexed: 12/24/2022] Open
Abstract
BACKGROUND Colorectal cancer (CRC) is a common malignancy worldwide. Despite being the most common cancer in Singapore, CRC screening rate remains low due to knowledge deficits, social reasons such as inconvenience and a lack of reminder or recommendation. A decision aid (DA) may facilitate an individual's decision-making to undertake CRC screening by addressing misconceptions and barriers. We postulate that a more person-centred and culturally adapted DA will better serve the local population. The views of the target users are thus needed to develop such a DA. A CRC screening DA prototype has been adapted from an American DA to cater to the Asian users. This study aimed to explore user perspectives on an adapted CRC screening DA-prototype in terms of the design, content and perceived utility. METHODS The study used in-depth interviews (IDIs) and focus group discussions (FGDs) to gather qualitative data from English-literate multi-ethnic Asian adults aged 50 years old and above. They had yet to screen for CRC before they were recruited from a public primary care clinic in Singapore. The interviews were audio-recorded, transcribed and analysed to identify emergent themes via thematic analysis. RESULTS This study included 27 participants involved in 5 IDI and 5 FGDs. Participants found the DA easily comprehensible and of appropriate length. They appreciated information about the options and proposed having multi-lingual DAs. The design, in terms of the layout, size and font, was well-accepted but there were suggestions to digitalize the DA. Participants felt that the visuals were useful but there were concerns about modesty due to the realism of the illustration. They would use the DA for information-sharing with their family and for discussion with their doctor for decision making. They preferred the doctor's recommendation for CRC screening and initiating the use of the DA. CONCLUSIONS Participants generally had favourable perceptions of the DA-prototype. A revised DA will be developed based on their feedback. Further input from doctors on the revised DA will be obtained before assessing its effectiveness to increase CRC screening rate in a randomized controlled trial.
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Affiliation(s)
- Sok Wei Julia Yuen
- SingHealth Polyclinics, 167, Jalan Bukit Merah, Connection One, Tower 5, #15-10, Singapore, 150167, Singapore.
| | - Tsang Yew Tay
- SingHealth Polyclinics, 167, Jalan Bukit Merah, Connection One, Tower 5, #15-10, Singapore, 150167, Singapore
| | - Ning Gao
- SingHealth Polyclinics, 167, Jalan Bukit Merah, Connection One, Tower 5, #15-10, Singapore, 150167, Singapore
| | - Nian Qin Tho
- Ministry of Health Holdings, Singapore, Singapore
| | - Ngiap Chuan Tan
- SingHealth Polyclinics, 167, Jalan Bukit Merah, Connection One, Tower 5, #15-10, Singapore, 150167, Singapore
- SingHealth-Duke NUS Family Medicine Academic Clinical Programme, Singapore, Singapore
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Adapting two American Decision Aids for Mild Traumatic Brain Injury to the Canadian Context Using the Nominal Group Technique. PATIENT-PATIENT CENTERED OUTCOMES RESEARCH 2020; 13:729-743. [PMID: 33078377 DOI: 10.1007/s40271-020-00459-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 09/17/2020] [Indexed: 10/23/2022]
Abstract
BACKGROUND Decision aids are patient-focused tools that have the potential to reduce the overuse of head computed tomography (CT) scans. OBJECTIVE The objective of this study was to create a consensus among Canadian mild traumatic brain injury and emergency medicine experts on modifications required to adapt two American decision aids about head CT use for adult and paediatric mild traumatic brain injury to the Canadian context. METHODS We invited 21 Canadian stakeholders and the two authors of the American decision aids to a Nominal Group Technique consensus meeting to generate suggestions for adapting the decision aids. This method encourages idea generation and sharing between team members. Each idea was discussed and then prioritised using a voting system. We collected data using videotaping, writing material and online collaborative writing tools. The modifications proposed were analysed using a qualitative thematic content analysis. RESULTS Twenty-one participants took part in the meeting, including researchers and clinician researchers (n = 9; 43%), patient partners (n = 3; 14%) and decision makers (n = 2; 10%). A total of 84 ideas were generated. Participants highlighted the need to clarify the purpose of the decision aids, the nature of the problem being addressed and the target population. The tools require sociocultural adaptations, better identification of their target population, better description of head CT utility, advantages and related risks, modification of the visual and written representation of the risk of brain injury and head CT use, and locally adapted, patient follow-up plans. CONCLUSIONS This study based on a Nominal Group Technique identified several adaptations for two American decision aids about head CT use for mild traumatic brain injury to support their use in Canada's different healthcare, social, cultural and legal context. These adaptations concerned the target users of the decision aids, the information presented, and how the benefits and risks were communicated in the decision aids. Future steps include prototyping the two adapted decision aids, conducting formative evaluations with actual emergency department patients and clinicians, and measuring the impact of the adapted tools on CT scan use.
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Auger C, Mortenson WB, Jutai JW, Seguin-Tremblay N, Chenel V, Guay M. Older adults' use of an online decision support system: Usability and stability of assistive technology recommendations. Assist Technol 2020; 34:316-325. [PMID: 32865488 DOI: 10.1080/10400435.2020.1815251] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/23/2022] Open
Abstract
Online decision support systems (DSS) may help older adults self-select assistive technology (AT) by offering recommendations. User interactions with DSSs may change the recommendations they receive. OBJECTIVE We evaluated recommendations stability and usability of an online DSS. METHODS Middle-aged and older adults (n = 43) were observed while using the DSS. The stability of DSS recommendations (ATs and advice) was compared between two time points, using a three-point scale: no, partial, or full agreement. Usability was coded, referencing ISO standards. RESULTS Half (51%) of participants received AT recommendations from the DSS in both sessions, with full (14%) or partial (12%) agreement. All but one participant received advice, and almost all of them had full (40%) or partial (56%) agreement between sessions. Many of the usability issues appear to be the result of the users inaccurately measuring their environment, challenges in understanding the questions being asked, and improperly making selections from the system. DISCUSSION Strict AT matching rules versus generic advice, and usability issues, likely reduced the matching rate and stability of AT recommendations. CONCLUSION It appears that some users may require assistance with the system, and we suggest changes to the DSS format and content to improve stability and usability.
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Affiliation(s)
- Claudine Auger
- Center for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montréal, Canada.,School of Rehabilitation, Université de Montréal, Montréal, Canada
| | - W Ben Mortenson
- Department of Occupational Science & Occupational Therapy, University of British Columbia, Vancouver, Canada
| | - Jeffrey W Jutai
- Interdisciplinary School of Health Sciences, University of Ottawa, Ottawa, Canada.,LIFE Research Institute, Ottawa, Canada
| | | | - Vanessa Chenel
- Center for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montréal, Canada.,School of Rehabilitation, Université de Montréal, Montréal, Canada
| | - Manon Guay
- School of Rehabilitation, Université de Sherbrooke, Sherbrooke, Canada
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Austin JD, Shelton RC, Lee Argov EJ, Tehranifar P. Older Women’s Perspectives Driving Mammography Screening Use and Overuse: a Narrative Review of Mixed-Methods Studies. CURR EPIDEMIOL REP 2020. [DOI: 10.1007/s40471-020-00244-3] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/11/2023]
Abstract
Abstract
Purpose of Review
Examining what older women know and perceive about mammography screening is critical for understanding patterns of under- and overuse, and concordance with screening mammography guidelines in the USA. This narrative review synthesizes qualitative and quantitative evidence around older women’s perspectives toward mammography screening.
Recent Findings
The majority of 43 identified studies focused on promoting mammography screening in women of different ages, with only four studies focusing on the overuse of mammography in women ≥ 70 years old. Older women hold positive attitudes around screening, perceive breast cancer as serious, believe the benefits outweigh the barriers, and are worried about undergoing treatment if diagnosed. Older women have limited knowledge of screening guidelines and potential harms of screening.
Summary
Efforts to address inequities in mammography access and underuse need to be supplemented by epidemiologic and interventional studies using mixed-methods approaches to improve awareness of benefits and harms of mammography screening in older racially and ethnically diverse women. As uncertainty around how best to approach mammography screening in older women remains, understanding women’s perspectives along with healthcare provider and system-level factors is critical for ensuring appropriate and equitable mammography screening use in older women.
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Guay M, Latulippe K, Auger C, Giroux D, Séguin-Tremblay N, Gauthier J, Genest C, Morales E, Vincent C. Self-Selection of Bathroom-Assistive Technology: Development of an Electronic Decision Support System (Hygiene 2.0). J Med Internet Res 2020; 22:e16175. [PMID: 32773380 PMCID: PMC7445614 DOI: 10.2196/16175] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/13/2019] [Revised: 04/28/2020] [Accepted: 06/03/2020] [Indexed: 11/13/2022] Open
Abstract
BACKGROUND A clinical algorithm (Algo) in paper form is used in Quebec, Canada, to allow health care workers other than occupational therapists (OTs) to make bathroom adaptation recommendations for older adults. An integrated knowledge transfer process around Algo suggested an electronic version of this decision support system (electronic decision support system [e-DSS]) to be used by older adults and their caregivers in search of information and solutions for their autonomy and safety in the bathroom. OBJECTIVE This study aims to (1) create an e-DSS for the self-selection of bathroom-assistive technology by community-dwelling older adults and their caregivers and (2) assess usability with lay users and experts to improve the design accordingly. METHODS On the basis of a user-centered design approach, the process started with content identification for the prototype through 7 semistructured interviews with key informants of various backgrounds (health care providers, assistive technology providers, and community services) and 4 focus groups (2 with older adults and 2 with caregivers). A thematic content transcript analysis was carried out and used during the creation of the prototype. The prototype was refined iteratively using think-aloud and observation methods with a clinical expert (n=1), researchers (n=3), OTs (n=3), older adults (n=3), and caregivers (n=3), who provided information on the usability of the e-DSS. RESULTS Overall, 4 themes served as the criteria for the prototype of the electronic Algo (Hygiene 2.0 [H2.0]): focus (safety, confidentiality, well-being, and autonomy), engage, facilitate (simplify, clarify, and illustrate), and access. For example, users first pay attention to the images (engage and illustrate) that can be used to depict safe postures (safety), illustrate questions embedded in the decision support tool (clarify and illustrate), and demonstrate the context of the use of assistive technology (safety and clarify). CONCLUSIONS The user-centered design of H2.0 allowed the cocreation of an e-DSS in the form of a website, in line with the needs of community-dwelling older adults and their caregivers seeking bathroom-assistive technology that enables personal hygiene. Each iteration improved usability and brought more insight into the users' realities, tailoring the e-DSS to the implementation context.
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Affiliation(s)
- Manon Guay
- School of Rehabilitation, Université de Sherbrooke, Sherbrooke, QC, Canada.,Center for Research on Aging, Sherbrooke, QC, Canada
| | - Karine Latulippe
- Department of Teaching and Learning Studies, Université Laval, Quebec, QC, Canada
| | - Claudine Auger
- School of Rehabilitation, Faculty of Medicine, Université de Montréal, Montreal, QC, Canada.,Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, Montreal, QC, Canada
| | - Dominique Giroux
- Center of Excellence on Aging Quebec, Quebec, QC, Canada.,Department of Rehabilitation, Faculty of Medicine, Université Laval, Quebec, QC, Canada.,VITAM - Centre de recherche en santé durable, Quebec, QC, Canada
| | | | - Josée Gauthier
- CIUSSS de la Mauricie-et-du-Centre-du-Québec, Trois-Rivières, QC, Canada
| | | | - Ernesto Morales
- Department of Rehabilitation, Faculty of Medicine, Université Laval, Quebec, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation and Social Integration, Quebec, QC, Canada
| | - Claude Vincent
- Department of Rehabilitation, Faculty of Medicine, Université Laval, Quebec, QC, Canada.,Center for Interdisciplinary Research in Rehabilitation and Social Integration, Quebec, QC, Canada
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Saeed F, Sardar M, Rasheed K, Naseer R, Epstein RM, Davison SN, Mujtaba M, Fiscella KA. Dialysis Decision Making and Preferences for End-of-Life Care: Perspectives of Pakistani Patients Receiving Maintenance Dialysis. J Pain Symptom Manage 2020; 60:336-345. [PMID: 32201311 PMCID: PMC7375006 DOI: 10.1016/j.jpainsymman.2020.03.009] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/16/2020] [Revised: 03/11/2020] [Accepted: 03/12/2020] [Indexed: 02/06/2023]
Abstract
CONTEXT Previous studies from the U.S. and Canada report deficiencies in informed decision making and a need to improve end-of-life (EoL) care in patients undergoing dialysis. However, there is a paucity of literature on these issues in Pakistani dialysis patients, who differ from Western patients in culture, religion, and available health care services. OBJECTIVES To study informed dialysis decision-making and EoL attitudes and beliefs in Pakistani patients receiving dialysis. METHODS We used convenience sampling to collect 522 surveys (90% response rate) from patients in seven different dialysis units in Pakistan. We used an existing dialysis survey tool, translated into Urdu, and backtranslated to English. A facilitator distributed the survey, explained questions, and orally administered it to patients unable to read. RESULTS Less than one-fourth of the respondents (23%) felt informed about their medical condition, and 45% were hopeful that their condition would improve in the future. More than half (54%) wished to know their prognosis, and 80% reported having no prognostic discussion. Almost 63% deemed EoL planning important, but only 5% recalled discussing EoL decisions with a doctor during the last 12 months. Nearly 62% of the patients regretted their decision to start dialysis. Patients' self-reported knowledge of hospice (5%) and palliative care (7.9%) services was very limited, yet 46% preferred a treatment plan focused on comfort and symptom management rather than life extension. CONCLUSION Pakistani patients reported a need for better informed dialysis decision making and EoL care and better access to palliative care services. These findings underscore the need for palliative care training of Pakistani physicians and in other developing countries to help address communication and EoL needs of their dialysis patients.
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Affiliation(s)
- Fahad Saeed
- Division of Nephrology, Department of Medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA; Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA.
| | - Muhammad Sardar
- Department of Medicine, University of Arizona, Tuscan, Arizona, USA
| | - Khalid Rasheed
- Department of Medicine, Shifa medical Center, Islamabad, Pakistan
| | - Raza Naseer
- The Wright Center for Community Health, Scranton, Pennsylvania, USA
| | - Ronald M Epstein
- Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA; Department of Psychiatry, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA; Department of Family Medicine and Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA
| | - Sara N Davison
- Division of Nephrology & Immunology, University of Alberta, Edmonton, Alberta, Canada
| | - Muhammad Mujtaba
- Division of Nephrology, Department of Medicine, University of Texas Medical Branch, Galveston, Texas, USA
| | - Kevin A Fiscella
- Department of Family Medicine and Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA
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Baptista S, Heleno B, Pinto M, Guimarães B, China D, Ramos JP, Teixeira A, Taylor KL, Martins C. Translation and cultural adaptation of a prostate cancer screening decision aid: a qualitative study in Portugal. BMJ Open 2020; 10:e034384. [PMID: 32217563 PMCID: PMC7170593 DOI: 10.1136/bmjopen-2019-034384] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/04/2023] Open
Abstract
OBJECTIVES To translate and culturally adapt an English language patient decision aid addressing prostate cancer screening, so it can be used by Portuguese men. DESIGN Qualitative study. We followed the European Centre for Disease Prevention and Control's (ECDC) five-step, stakeholder-based approach to adapting health communication materials: (1) selection of materials and process coordinators, (2) early review, (3) translation and back translation, (4) comprehension testing with cognitive semi-structured interviews and (5) proofreading. Content analysis was performed using Ligre software. SETTING AND PARTICIPANTS Cognitive interviews with 15 men to refine a decision aid after its translation. Eligible participants were Portuguese native-speaking men aged 55-69 years old recruited from the local community (urban and suburban) of Oporto district through advertisements in social media and senior universities between January and March 2019. A previous diagnosis of prostate cancer was the single exclusion criterion. RESULTS Five main themes are presented: informational content, information comprehension, sociocultural appropriateness, feelings and main message and personal perspective concerning prostate cancer screening. Most men found the translated version of the decision aid to be clear, comprehensive and appropriate for its target population, although some suggested that medical terms could be a barrier. The data collected from men's interviews afforded the researchers the opportunity to clarify concepts and expand existing content. CONCLUSIONS A decision aid was successfully translated and adapted to the Portuguese cultural setting. Our ECDC based approach can be replicated by other workgroups to translate and culturally adapt decision aids.
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Affiliation(s)
- Sofia Baptista
- Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), Faculty of Medicine, University of Porto, Porto, Portugal
- Serpa Pinto Family Medicine Unit, Agrupamento de Centros de Saúde Porto Ocidental, Porto, Portugal
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
| | - Bruno Heleno
- NOVA Medical School|Faculdade de Ciências Médicas, Universidade NOVA de Lisboa, Lisboa, Portugal
- Comprehensive Health Research Center (CHRC), Universidade NOVA de Lisboa, Lisboa, Portugal
| | - Marta Pinto
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
- Department of Psychology of deviance and justice, Faculty of Psychology and Education Sciences, University of Porto, Porto, Portugal
| | - Bruna Guimarães
- Serpa Pinto Family Medicine Unit, Agrupamento de Centros de Saúde Porto Ocidental, Porto, Portugal
| | - Diogo China
- Serpa Pinto Family Medicine Unit, Agrupamento de Centros de Saúde Porto Ocidental, Porto, Portugal
| | - João Pedro Ramos
- Department of Psychology of deviance and justice, Faculty of Psychology and Education Sciences, University of Porto, Porto, Portugal
| | - Andreia Teixeira
- Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), Faculty of Medicine, University of Porto, Porto, Portugal
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
| | - Kathryn L Taylor
- Department of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC, USA
| | - Carlos Martins
- Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), Faculty of Medicine, University of Porto, Porto, Portugal
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
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Tan NC, Koong Ying Leng A, Phoon Kwong Yun I, Wang Zhen S, Paulpandi M, Lee YK, Furler J, Car J, Ng CJ. Cultural adaptation of a patient decision-aid for insulin therapy. BMJ Open 2020; 10:e033791. [PMID: 32152165 PMCID: PMC7064126 DOI: 10.1136/bmjopen-2019-033791] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/03/2022] Open
Abstract
INTRODUCTION Patient decision-aids (PDAs) support patients in selecting evidence-based treatment options. PDA is useful only if the user understands the content to make personalised decisions. Cultural adaptation is a process of adjusting health messages so that the information is accurate, relevant and understandable to users from a different population. A PDA has been developed to assist Malaysian patients with secondary drug failure to initiate insulin therapy to control their type 2 diabetes mellitus (T2DM). Likewise, patients with T2DM in neighbouring Singapore face similar barriers in commencing insulin treatment, which a PDA may facilitate decision-making in selecting personalised therapy. OBJECTIVE The study aimed to explore the views and perceptions of Singaporean primary care providers on the Malaysia PDA to initiate insulin therapy and described the cultural adaptation process used in the design and development of a new PDA, which would be trialled in a Singapore primary healthcare institution. METHOD Qualitative research method was deployed to conduct one-to-one in-depth interviews of the healthcare providers at the trial site (SingHealth Polyclinics-SHP), including six primary care physicians and four nurses to gather their views and feedbacks on the Malaysian PDA. The interviews were transcribed, audited and analysed (standard content analysis) to identify themes relating to the content, layout, concerns of the original PDA and suggestions to the design of the new SHP PDA. RESULTS Cultural adaptation of the new PDA includes change to the overall design, graphics (including pictograms), presentation styles, additional contextualised content (personalisation, subheadings, cost and treatment option), modified phrasing of the subtitles and concerns (choice of words) relevant to the new users. CONCLUSION A PDA on insulin therapy underwent cultural adaptation before its implementation in another population in a neighbouring country. Its relevance and effectiveness will be evaluated in future research.
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Affiliation(s)
- Ngiap Chuan Tan
- Department of Research, SingHealth Polyclinics, Singapore, Singapore
- Duke-NUS, Singapore, Singapore
| | | | | | | | | | - Yew Kong Lee
- Department of Primary Care Medicine, University of Malaya, Kuala Lumpur, Malaysia
| | - John Furler
- Department of General Practice and Primary Health Care, University of Melbourne, Carlton, Victoria, Australia
| | - Josip Car
- Health Services and Outcomes Research Programme, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore
- Global eHealth Unit, Department of Primary Care and Public Health, School of Public Health, Imperial College London, London, UK
| | - Chirk Jenn Ng
- Department of Primary Care Medicine, University of Malaya, Kuala Lumpur, Malaysia
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Masi D, Gomez-Rexrode AE, Bardin R, Seidman J. The "Preparation for Shared Decision-Making" Tool for Women With Advanced Breast Cancer: Qualitative Validation Study. J Particip Med 2019; 11:e16511. [PMID: 33055071 PMCID: PMC7434058 DOI: 10.2196/16511] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/04/2019] [Revised: 11/01/2019] [Accepted: 11/27/2019] [Indexed: 11/30/2022] Open
Abstract
Background The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process. Objective Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population. Methods We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool. Results Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool. Conclusions This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool’s implementation in the clinical workflow and its impact on patient outcomes.
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Affiliation(s)
- Domitilla Masi
- Avalere Health, Center for Healthcare Transformation, Washington, DC, United States
| | | | - Rina Bardin
- Avalere Health, Center for Healthcare Transformation, Washington, DC, United States
| | - Joshua Seidman
- Avalere Health, Center for Healthcare Transformation, Washington, DC, United States
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Baptista S, Heleno B, Pinto M, Teixeira A, Taylor KL, Martins C. Translation and cultural adaptation of the web and printed versions of a decision aid to support men's prostate cancer screening choice: a protocol. BMJ Open 2019; 9:e028938. [PMID: 31594872 PMCID: PMC6797286 DOI: 10.1136/bmjopen-2019-028938] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/04/2023] Open
Abstract
INTRODUCTION Prostate cancer is one of the most frequent cancers among men. However, screening for prostate cancer carries many risks and a small benefit. Thus, based on the available evidence, most medical organisations advocate a shared decision-making process, in which decision aids may play an important role. Nevertheless, to date there is no such instrument to be used by Portuguese men. Our goal is to translate and perform the cultural adaptation of an English language prostate cancer screening decision aid called 'Making the best choice', in web and printed formats, which has been developed and tested by a workgroup from Georgetown University (USA). METHODS AND ANALYSIS Culturally and technically inappropriate recommendations in the original decision aid will be reviewed by the process coordinator and a linguistic expert. Two forward translations from English to Portuguese will be done, followed by a back-translation and an independent expert review. We will further improve the decision aid through an iterative process of data collection, data analysis and decision aid review. Individual semistructured cognitive interviews will be conducted and audiotaped with 55-69-year-old men recruited from the local community (urban and suburban) of Oporto district. We plan a total sample size of 30 participants (15 interviews per format). All participants will receive written information about the study and will sign individual consent forms. After verbatim transcription of the audiofiles, a thematic categorical analysis will be conducted using Ligre Software. ETHICS AND DISSEMINATION The study protocol was approved by the Health Ethics Committee from Centro Hospitalar de São João/Faculdade de Medicina da Universidade do Porto. Results from this study will be disseminated in peer-reviewed publications and the Portuguese decision aid will available to Portuguese men.
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Affiliation(s)
- Sofia Baptista
- Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), University of Porto Faculty of Medicine, Porto, Portugal
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
| | - Bruno Heleno
- CEDOC, Chronic Diseases Research Centre, NOVA Medical School, Lisboa, Portugal
| | - Marta Pinto
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
- Psychology of Deviance and Justice, Faculty of Psychology and Education Sciences, University of Porto, Porto, Portugal
| | - Andreia Teixeira
- Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), University of Porto Faculty of Medicine, Porto, Portugal
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
| | - Kathryn L Taylor
- Department of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, Columbia, USA
| | - Carlos Martins
- Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), University of Porto Faculty of Medicine, Porto, Portugal
- Centre for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal
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Jull J, Hizaka A, Sheppard AJ, Kewayosh A, Doering P, MacLeod L, Joudain G, Plourde J, Dorschner D, Rand M, Habash M, Graham ID. An integrated knowledge translation approach to develop a shared decision-making strategy for use by Inuit in cancer care: a qualitative study. Curr Oncol 2019; 26:192-204. [PMID: 31285666 PMCID: PMC6588049 DOI: 10.3747/co.26.4729] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022] Open
Abstract
Background In relation to the general Canadian population, Inuit face increased cancer risks and barriers to health services use. In shared decision-making (sdm), health care providers and patients make health care decisions together. Enhanced participation in cancer care decisions is a need for Inuit. Integrated knowledge translation (kt) supports the development of research evidence that is likely to be patient-centred and applied in practice. Objective Using an integrated kt approach, we set out to promote the use of sdm by Inuit in cancer care. Methods An integrated kt study involving researchers with a Steering Committee of cancer care system partners who support Inuit in cancer care ("the team") consisted of 2 theory-driven phases:■ using consensus-building methods to tailor a previously developed sdm strategy and developing training in the sdm strategy; and■ training community support workers (csws) in the sdm strategy and testing the sdm strategy with community members. Results The team developed a sdm strategy that included a workshop and a booklet with 6 questions for use by csws with patients. The sdm strategy (training and booklet) was finalized based on feedback from 5 urban-based Inuit csws who were recruited and trained in using the strategy. Trained csws were matched with 8 community members, and use of the sdm strategy was assessed during interviews, reported as 6 themes. Participants found the sdm strategy to be useful and feasible for use. Conclusions An integrated kt approach of structured research processes with partners developed a sdm strategy for use by Inuit in cancer care. Further work is needed to test the sdm strategy.
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Affiliation(s)
- J Jull
- School of Rehabilitation Therapy, Queen's University, Kingston, ON
- Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, ON
| | - A Hizaka
- Tungasuvvingat Inuit, Ottawa, ON
| | - A J Sheppard
- Indigenous Cancer Control Unit, Cancer Care Ontario, Toronto, ON
| | - A Kewayosh
- Indigenous Cancer Control Unit, Cancer Care Ontario, Toronto, ON
| | | | | | - G Joudain
- Ottawa Health Services Network Inc., Ottawa, ON
| | - J Plourde
- Ottawa Health Services Network Inc., Ottawa, ON
| | - D Dorschner
- Ottawa Health Services Network Inc., Ottawa, ON
| | - M Rand
- Indigenous Cancer Control Unit, Cancer Care Ontario, Toronto, ON
| | - M Habash
- Indigenous Cancer Control Unit, Cancer Care Ontario, Toronto, ON
| | - I D Graham
- Epidemiology and Public Health, University of Ottawa, Ottawa, ON
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Discussion: Decline in Racial Disparities in Postmastectomy Breast Reconstruction: A Surveillance, Epidemiology, and End Results Analysis from 1998 to 2014. Plast Reconstr Surg 2019; 143:1571-1572. [PMID: 31136469 DOI: 10.1097/prs.0000000000005612] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
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Xu J, Prince AER. Shared decision-making in vascular surgery. J Vasc Surg 2019; 70:1711-1715. [PMID: 31068265 DOI: 10.1016/j.jvs.2019.03.002] [Citation(s) in RCA: 26] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/19/2018] [Accepted: 03/02/2019] [Indexed: 01/31/2023]
Abstract
BACKGROUND Ideally, patients' decision-making regarding surgical options should reflect myriad implicit values. The informed consent process is meant to ensure that patients' values mirror clinical decisions regarding expectations for outcomes, such as quality of life, life expectancy, and subsequent pain and suffering. However, surgeons are not always equipped to discuss patients' values. METHODS Shared decision-making is a method that could help surgeons elicit patients' values and subsequently improve the patient's knowledge and satisfaction, among other important outcomes. Yet, several barriers hinder implementation of shared decision-making in the clinic, such as time, interpersonal characteristics, and trust. To address concerns, several tools and approaches have been developed to increase shared decision-making in the clinic. This article highlights two strategies: the three-talk model and decision aids. CONCLUSIONS Shared decision-making is a tool that could be especially valuable in discussions regarding elective surgery. Further research is needed to determine how best to implement shared decision-making in the surgical setting. Without full integration of patients' values into discussions of surgical options, there will continue to be a disconnect between the surgical procedures, outcomes, and patients' values.
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Affiliation(s)
- Jun Xu
- Division of Vascular Surgery, Department of Surgery, University of Iowa Hospitals and Clinics, Iowa City, Iowa.
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