|
1
|
Miroševič Š, Klemenc-Ketiš Z, Peterlin B. Family history tools for primary care: A systematic review. Eur J Gen Pract 2022; 28:75-86. [PMID: 35510897 PMCID: PMC9090347 DOI: 10.1080/13814788.2022.2061457] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/09/2022] Open
Abstract
Background Many medical family history (FH) tools are available for various settings. Although FH tools can be a powerful health screening tool in primary care (PC), they are currently underused. Objectives This review explores the FH tools currently available for PC and evaluates their clinical performance. Methods Five databases were systematically searched until May 2021. Identified tools were evaluated on the following criteria: time-to-complete, integration with electronic health record (EMR) systems, patient administration, risk-assessment ability, evidence-based management recommendations, analytical and clinical validity and clinical utility. Results We identified 26 PC FH tools. Analytical and clinical validity was poorly reported and agreement between FH and gold standard was commonly inadequately reported and assessed. Sensitivity was acceptable; specificity was found in half of the reviewed tools to be poor. Most reviewed tools showed a capacity to successfully identify individuals with increased risk of disease (6.2–84.6% of high and/or moderate or increased risk individuals). Conclusion Despite the potential of FH tools to improve risk stratification of patients in PC, clinical performance of current tools remains limited as well as their integration in EMR systems. Twenty-one FH tools are designed to be self-administered by patients.
Collapse
Affiliation(s)
- Špela Miroševič
- Department of Family Medicine, Medical Faculty Ljubljana, Ljubljana, Slovenia
| | - Zalika Klemenc-Ketiš
- Department of Family Medicine, Medical Faculty Ljubljana, Ljubljana, Slovenia.,Department of Family Medicine, Faculty of Medicine, University of Maribor, Maribor, Slovenia.,Community Health Centre Ljubljana, Ljubljana, Slovenia
| | - Borut Peterlin
- Clinical Institute for Medical Genetics, University Medical Centre Ljubljana, Ljubljana, Slovenia
| |
Collapse
|
|
2
|
Miroševič Š, Krajc K, Klemenc-Ketiš Z, Selič-Zupančič P. Mapping Users' Experience of a Family History and Genetic Risk Algorithm Tool in Primary Care. Public Health Genomics 2021; 25:1-10. [PMID: 34515220 DOI: 10.1159/000518086] [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: 03/04/2021] [Accepted: 06/22/2021] [Indexed: 11/19/2022] Open
Abstract
INTRODUCTION The development of a family history (FH) questionnaire (FHQ) provides an insight into a patient's familiarity of a trait and helps to identify individuals at increased risk of disease. A critical aspect of developing a new tool is exploring users' experience. OBJECTIVE The objective of this study was to examine users' experience, obstacles and challenges, and their views and concerns in the applicability of a new tool for determining genetic risk in Slovenia's primary care. METHODS We used a qualitative approach. The participants completed a risk assessment software questionnaire that calculates users' likelihood of developing familial diseases. Audio-taped semi-structured telephone interviews were conducted to evaluate their experience. There were 21 participants, and analyses using the constant comparative method were employed. RESULTS We identified 3 main themes: obstacles/key issues, suggestions for improvements, and coping. The participants were poorly satisfied with the clarity of instructions, technical usability problems, and issues with the entry of relatives' data. They expressed satisfaction with some of the characteristics of the FHQ (e.g., straightforward and friendly format, easy entry, and comprehension). They suggested simpler language, that the disease risk should be targeted toward the disease, that the FHQ should include patient-specific recommendations, and that it should be part of the electronic medical records. When discussing what would they do with the results of the FHQ, the participants used different coping strategies: active (e.g., seeking information) or passive (e.g., avoidance). DISCUSSION/CONCLUSION User experience was shown to be a synthesis of obstacles, overcoming them with suggestions for improvements, and exploration of various coping mechanisms that may emerge from dealing with the stressor of "being at risk."
Collapse
Affiliation(s)
- Špela Miroševič
- Department of Family Medicine, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia
| | - Kaja Krajc
- Department of Psychology, Faculty of Mathematics, Natural Sciences and Information Technologies, University of Primorska, Koper, Slovenia
| | - Zalika Klemenc-Ketiš
- Department of Family Medicine, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia
- Department of Family Medicine, Faculty of Medicine, University of Maribor, Maribor, Slovenia
- Community Health Centre Ljubljana, Ljubljana, Slovenia
| | - Polona Selič-Zupančič
- Department of Family Medicine, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia
| |
Collapse
|
|
3
|
Li X, Kahn RM, Wing N, Zhou ZN, Lackner AI, Krinsky H, Badiner N, Fogla R, Wolfe I, Bergeron H, Baltich Nelson B, Thomas C, Christos PJ, Sharaf RN, Cantillo E, Holcomb K, Chapman-Davis E, Frey MK. Leveraging Health Information Technology to Collect Family Cancer History: A Systematic Review and Meta-Analysis. JCO Clin Cancer Inform 2021; 5:775-788. [PMID: 34328789 PMCID: PMC8812651 DOI: 10.1200/cci.21.00004] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/07/2021] [Revised: 04/08/2021] [Accepted: 06/09/2021] [Indexed: 12/11/2022] Open
Abstract
PURPOSE Collection of family cancer histories (FCHs) can identify individuals at risk for familial cancer syndromes. The aim of this study is to evaluate the literature on existing strategies whereby providers use information technology to assemble FCH. METHODS A systematic search of online databases (Ovid MEDLINE, Cochrane, and Embase) between 1980 and 2020 was performed. Statistical heterogeneity was assessed through the chi-square test (ie, Cochrane Q test) and the inconsistency statistic (I2). A random-effects analysis was used to calculate the pooled proportions and means. RESULTS The comprehensive search produced 4,005 publications. Twenty-eight studies met inclusion criteria. Twenty-seven information technology tools were evaluated. Eighteen out of 28 studies were electronic surveys administered before visits (18, 64.3%). Five studies administered tablet surveys in offices (5, 17.8%). Four studies collected electronic survey via kiosk before visits (4, 14.3%), and one study used animated virtual counselor during visits (1, 3.6%). Among the studies that use an FCH tool, the pooled estimate of the overall completion rate was 86% (CI, 72% to 96%), 84% (CI, 65% to 97%) for electronic surveys before visits, 89% (CI, 0.74 to 0.98) for tablet surveys, and 85% (CI, 0.66 to 0.98) for surveys via kiosk. Mean time required for completion was 31.0 minutes (CI, 26.1 to 35.9), and the pooled estimate of proportions of participants referred to genetic testing was 12% (CI, 4% to 23%). CONCLUSION Our review found that electronic FCH collection can be completed successfully by patients in a time-efficient manner with high rates of satisfaction.
Collapse
Affiliation(s)
- Xuan Li
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Ryan M. Kahn
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Noelani Wing
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Zhen Ni Zhou
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Andreas Ian Lackner
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Hannah Krinsky
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Nora Badiner
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Rhea Fogla
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Isabel Wolfe
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Hannah Bergeron
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Becky Baltich Nelson
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Charlene Thomas
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Paul J. Christos
- Division of Biostatistics, Department of Population Health Sciences, Weill Cornell Medicine, New York, NY
| | - Ravi N. Sharaf
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Evelyn Cantillo
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Kevin Holcomb
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Eloise Chapman-Davis
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| | - Melissa K. Frey
- Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Weill Cornell Medicine, New York, NY
| |
Collapse
|
|
4
|
Chung S, Rosewall T, Menezes R, Kalliomäki T. "I'm Just Guessing These Answers!" An Evaluation of the (In)Accuracy of Patient-Reported Medical History Collected as Part of a Breast Imaging Program. J Med Imaging Radiat Sci 2018; 49:390-396. [PMID: 30514556 DOI: 10.1016/j.jmir.2018.03.002] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/15/2017] [Revised: 03/13/2018] [Accepted: 03/19/2018] [Indexed: 10/27/2022]
Abstract
INTRODUCTION Hundreds of thousands of Ontario women receive breast screening imaging each year. The patient's medical history is a vital tool used to personalize breast screening approaches. This study evaluated the accuracy of self-reported medical and imaging history in patients about to receive breast imaging procedures in a large urban Canadian hospital. The patient experience with using a blank screening form vs. a novel prefilled screening form was also evaluated. METHODS AND MATERIALS The study was conducted in two phases. Phase 1 compared patient-reported information (via the blank screening form) to information previously captured in the Radiology Information and Picture Archiving Communication Systems to assess data accuracy. In phase 2, study questionnaires were used to collect data on the patients' experience with the screening form in two cohorts (between the blank and a novel prefilled screening form). RESULTS Data accuracy: for mammography (n = 60), 40% of the patients could accurately recall when and where their last mammogram was performed. For breast ultrasound (n = 43) and breast magnetic resonance imaging (n = 20), significantly fewer patients could accurately recall the date their last test was performed (14% and 10%, respectively). Of those who had previous breast surgery (n = 18), 100% were able to recall whether the surgery resulted in a benign or malignant diagnosis, and 61% were able to accurately recall the year they had the breast surgery. PATIENT EXPERIENCE Of the returned questionnaires, 65 provided feedback on the blank screening form while 55 provided feedback on the prefilled form. Ninety percent preferred to fill out the new prefilled screening form. The themes acknowledged a general improvement in the screening form, a decrease in frustration associated with having to recall their medical history, and the patients felt that the institution better understood their medical history. CONCLUSIONS The findings of this research indicate that asking patients to complete a blank medical screening form is a highly inaccurate method of gathering that important information. When that information was prefilled for the patient to review and update, patient frustration and stress were decreased, while satisfaction and confidence in the organization were increased.
Collapse
Affiliation(s)
- Sheena Chung
- Joint Department of Medical Imaging, Toronto, Ontario, Canada.
| | - Tara Rosewall
- Joint Department of Medical Imaging, Toronto, Ontario, Canada; Department of Radiation Oncology, University of Toronto, Toronto, Ontario, Canada
| | - Ravi Menezes
- Joint Department of Medical Imaging, Toronto, Ontario, Canada; Department of Medical Imaging, University of Toronto, Toronto, Ontario, Canada
| | - Tuula Kalliomäki
- Joint Department of Medical Imaging, Toronto, Ontario, Canada; Department of Medical Imaging, University of Toronto, Toronto, Ontario, Canada
| |
Collapse
|
|
5
|
Cleophat JE, Nabi H, Pelletier S, Bouchard K, Dorval M. What characterizes cancer family history collection tools? A critical literature review. ACTA ACUST UNITED AC 2018; 25:e335-e350. [PMID: 30111980 DOI: 10.3747/co.25.4042] [Citation(s) in RCA: 19] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/17/2022]
Abstract
Background Many tools have been developed for the standardized collection of cancer family history (fh). However, it remains unclear which tools have the potential to help health professionals overcome traditional barriers to collecting such histories. In this review, we describe the characteristics, validation process, and performance of existing tools and appraise the extent to which those tools can support health professionals in identifying and managing at-risk individuals. Methods Studies were identified through searches of the medline, embase, and Cochrane central databases from October 2015 to September 2016. Articles were included if they described a cancer fh collection tool, its use, and its validation process. Results Based on seventy-nine articles published between February 1978 and September 2016, 62 tools were identified. Most of the tools were paper-based and designed to be self-administered by lay individuals. One quarter of the tools could automatically produce pedigrees, provide cancer-risk assessment, and deliver evidence-based recommendations. One third of the tools were validated against a standard reference for collected fh quality and cancer-risk assessment. Only 3 tools were integrated into an electronic health records system. Conclusions In the present review, we found no tool with characteristics that might make it an efficient clinical support for health care providers in cancer-risk identification and management. Adequately validated tools that are connected to electronic health records are needed to encourage the systematic identification of individuals at increased risk of cancer.
Collapse
Affiliation(s)
- J E Cleophat
- Centre de recherche du chu de Québec, Axe Oncologie, Quebec City, QC.,Université Laval, Faculté de pharmacie, Quebec City, QC.,Centre de recherche sur le cancer, Quebec City, QC
| | - H Nabi
- Centre de recherche du chu de Québec, Axe Oncologie, Quebec City, QC.,Centre de recherche sur le cancer, Quebec City, QC.,inserm, U1018, Centre de recherche en épidémiologie et santé des populations, Villejuif, France
| | - S Pelletier
- Centre de recherche du chu de Québec, Axe Oncologie, Quebec City, QC.,Centre de recherche sur le cancer, Quebec City, QC
| | - K Bouchard
- Centre de recherche du chu de Québec, Axe Oncologie, Quebec City, QC.,Centre de recherche sur le cancer, Quebec City, QC
| | - M Dorval
- Centre de recherche du chu de Québec, Axe Oncologie, Quebec City, QC.,Université Laval, Faculté de pharmacie, Quebec City, QC.,Centre de recherche sur le cancer, Quebec City, QC.,Centre de recherche du cisss Chaudière-Appalaches, Lévis, QC
| |
Collapse
|
|
6
|
Jones JK, Tave A, Pezzullo JC, Kardia S, Lippes J. Long-term risk of hysterectomy and ectopic pregnancy among Vietnamese women using the quinacrine hydrochloride pellet system vs. intrauterine devices or tubal ligation for contraception. EUR J CONTRACEP REPR 2018; 23:105-115. [PMID: 29683010 DOI: 10.1080/13625187.2018.1449823] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/17/2022]
Abstract
OBJECTIVES Determine the long-term risk of hysterectomy and ectopic pregnancy in women using the quinacrine hydrochloride pellet system of permanent contraception (QS) relative to the comparable risk in women using Copper T intrauterine device (IUD) or tubal ligation surgery (TL) for long-term or permanent contraception. METHODS This was a retrospective cohort study, conducted in the Northern Vietnamese provinces of Ha Nam, Nam Dinh, Ninh Binh and Thai Binh. Women who had their first QS procedure, last IUD insertion or TL between 1989 and 1996 were interviewed regarding post-procedure health outcomes approximately 16 years post exposure. RESULTS A 95% response rate resulted in 21,040 completed interviews. Overall incidence rates were low for both outcomes (91/100,000 women years of follow-up and 22/100,000 women years of follow-up for hysterectomy and ectopic pregnancy, respectively). After accounting for variations in baseline characteristics between women choosing QS vs. the other two contraceptive methods, no significant excess hazard of either hysterectomy or ectopic pregnancy was associated with QS. CONCLUSIONS No significant excess long-term risk of hysterectomy or ectopic pregnancy was found among a large group of women using QS vs. IUD or TL for contraception after an average 16 years of follow-up.
Collapse
Affiliation(s)
| | | | - John C Pezzullo
- b Department of Biomathematics and Biostatistics , Georgetown University , Washington , DC , USA
| | - Sharon Kardia
- c School of Public Health , University of Michigan , Ann Arbor , MI , USA
| | - Jack Lippes
- d School of Medicine , State University of New York at Buffalo , Buffalo , NY , USA
| |
Collapse
|
|
7
|
Wu RR, Myers RA, McCarty CA, Dimmock D, Farrell M, Cross D, Chinevere TD, Ginsburg GS, Orlando LA. Protocol for the "Implementation, adoption, and utility of family history in diverse care settings" study. Implement Sci 2015; 10:163. [PMID: 26597091 PMCID: PMC4657284 DOI: 10.1186/s13012-015-0352-8] [Citation(s) in RCA: 17] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/11/2015] [Accepted: 11/12/2015] [Indexed: 12/24/2022] Open
Abstract
Background Risk assessment with a thorough family health history is recommended by numerous organizations and is now a required component of the annual physical for Medicare beneficiaries under the Affordable Care Act. However, there are several barriers to incorporating robust risk assessments into routine care. MeTree, a web-based patient-facing health risk assessment tool, was developed with the aim of overcoming these barriers. In order to better understand what factors will be instrumental for broader adoption of risk assessment programs like MeTree in clinical settings, we obtained funding to perform a type III hybrid implementation-effectiveness study in primary care clinics at five diverse healthcare systems. Here, we describe the study’s protocol. Methods/design MeTree collects personal medical information and a three-generation family health history from patients on 98 conditions. Using algorithms built entirely from current clinical guidelines, it provides clinical decision support to providers and patients on 30 conditions. All adult patients with an upcoming well-visit appointment at one of the 20 intervention clinics are eligible to participate. Patient-oriented risk reports are provided in real time. Provider-oriented risk reports are uploaded to the electronic medical record for review at the time of the appointment. Implementation outcomes are enrollment rate of clinics, providers, and patients (enrolled vs approached) and their representativeness compared to the underlying population. Primary effectiveness outcomes are the percent of participants newly identified as being at increased risk for one of the clinical decision support conditions and the percent with appropriate risk-based screening. Secondary outcomes include percent change in those meeting goals for a healthy lifestyle (diet, exercise, and smoking). Outcomes are measured through electronic medical record data abstraction, patient surveys, and surveys/qualitative interviews of clinical staff. Discussion This study evaluates factors that are critical to successful implementation of a web-based risk assessment tool into routine clinical care in a variety of healthcare settings. The result will identify resource needs and potential barriers and solutions to implementation in each setting as well as an understanding potential effectiveness. Trial registration NCT01956773
Collapse
Affiliation(s)
- R Ryanne Wu
- Duke Center for Applied Genomics & Precision Medicine and Duke Department of Medicine, Duke University, 411 West Chapel Hill Street, Ste. 500, Durham, NC, 27705, USA.
| | - Rachel A Myers
- Duke Center for Applied Genomics & Precision Medicine, Duke University, Durham, NC, USA.
| | | | - David Dimmock
- Human and Molecular Genetics Center, Medical College of Wisconsin, Milwaukee, WI, USA.
| | - Michael Farrell
- Center for Urban Population Health, Aurora University of Wisconsin, Milwaukee, WI, USA.
| | - Deanna Cross
- Department of Molecular and Medical Genetics, University of North Texas, Fort Worth, TX, USA.
| | - Troy D Chinevere
- Clinical Investigations Facility, David Grant Medical Center, U.S. Air Force, Travis, CA, USA.
| | - Geoffrey S Ginsburg
- Duke Center for Applied Genomics & Precision Medicine and Duke Department of Medicine and Pathology, Duke University, Durham, NC, USA.
| | - Lori A Orlando
- Duke Center for Applied Genomics & Precision Medicine and Duke Department of Medicine, Duke University, Durham, NC, USA.
| | | |
Collapse
|
|
8
|
Schultz M, Seo SB, Holt A, Regenbrecht H. Family history assessment for colorectal cancer (CRC) risk analysis - comparison of diagram- and questionnaire-based web interfaces. BMC Med Inform Decis Mak 2015; 15:95. [PMID: 26582273 PMCID: PMC4652433 DOI: 10.1186/s12911-015-0211-1] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/10/2015] [Accepted: 10/14/2015] [Indexed: 11/24/2022] Open
Abstract
Background Colorectal cancer (CRC) has a high incidence, especially in New Zealand. The reasons for this are unknown. While most cancers develop sporadically, a positive family history, determined by the number and age at diagnosis of affected first and second degree relatives with CRC is one of the major factors, which may increase an individual’s lifetime risk. Before a patient can be enrolled in a surveillance program a detailed assessment and documentation of the family history is important but time consuming and often inaccurate. The documentation is usually paper-based. Our aim was therefore to develop and validate the usability and efficacy of a web-based family history assessment tool for CRC suitable for the general population. The tool was also to calculate the risk and make a recommendation for surveillance. Methods Two versions of an electronic assessment tool, diagram-based and questionnaire-based, were developed with the risk analysis and recommendations for surveillance based on the New Zealand Guidelines Group recommendations. Accuracy of our tool was tested prior to the study by comparing risk calculations based on family history by experienced gastroenterologists with the electronic assessment. The general public, visiting a local science fair were asked to use and comment on the usability of the two interfaces. Results Ninety people assessed and commented on the two interfaces. Both interfaces were effective in assessing the risk to develop CRC through their familial history for CRC. However, the questionnaire-based interface performed with significantly better satisfaction (p = 0.001) than the diagram-based interface. There was no difference in efficacy though. Conclusion We conclude that a web-based questionnaire tool can assist in the accurate documentation and analysis of the family history relevant to determine the individual risk of CRC based on local guidelines. The calculator is now implemented and assessable through the web-page of a local charity for colorectal cancer awareness and integral part of the local general practitioners’ e-referral system for colonic imaging.
Collapse
Affiliation(s)
- Michael Schultz
- Department of Medicine, Dunedin School of Medicine, University of Otago, PO Box 56, Dunedin, 9054, New Zealand. .,Gastroenterology Unit, Southern District Health Board, Dunedin, New Zealand.
| | - Steven Bohwan Seo
- Department of Information Science, University of Otago, Dunedin, New Zealand
| | - Alec Holt
- Department of Information Science, University of Otago, Dunedin, New Zealand
| | - Holger Regenbrecht
- Department of Information Science, University of Otago, Dunedin, New Zealand
| |
Collapse
|
|
9
|
Evaluation of a novel electronic genetic screening and clinical decision support tool in prenatal clinical settings. Matern Child Health J 2015; 18:1233-45. [PMID: 24101435 DOI: 10.1007/s10995-013-1358-y] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/21/2023]
Abstract
"The Pregnancy and Health Profile" (PHP) is a free prenatal genetic screening and clinical decision support (CDS) software tool for prenatal providers. PHP collects family health history (FHH) during intake and provides point-of-care risk assessment for providers and education for patients. This pilot study evaluated patient and provider responses to PHP and effects of using PHP in practice. PHP was implemented in four clinics. Surveys assessed provider confidence and knowledge and patient and provider satisfaction with PHP. Data on the implementation process were obtained through semi-structured interviews with administrators. Quantitative survey data were analyzed using Chi square test, Fisher's exact test, paired t tests, and multivariate logistic regression. Open-ended survey questions and interviews were analyzed using qualitative thematic analysis. Of the 83% (513/618) of patients that provided feedback, 97% felt PHP was easy to use and 98% easy to understand. Thirty percent (21/71) of participating physicians completed both pre- and post-implementation feedback surveys [13 obstetricians (OBs) and 8 family medicine physicians (FPs)]. Confidence in managing genetic risks significantly improved for OBs on 2/6 measures (p values ≤0.001) but not for FPs. Physician knowledge did not significantly change. Providers reported value in added patient engagement and reported mixed feedback about the CDS report. We identified key steps, resources, and staff support required to implement PHP in a clinical setting. To our knowledge, this study is the first to report on the integration of patient-completed, electronically captured and CDS-enabled FHH software into primary prenatal practice. PHP is acceptable to patients and providers. Key to successful implementation in the future will be customization options and interoperability with electronic health records.
Collapse
|
|
10
|
Victorson D, Banas J, Smith J, Languido L, Shen E, Gutierrez S, Cordero E, Flores L. eSalud: designing and implementing culturally competent ehealth research with latino patient populations. Am J Public Health 2014; 104:2259-65. [PMID: 25320901 DOI: 10.2105/ajph.2014.302187] [Citation(s) in RCA: 34] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/22/2022]
Abstract
eHealth is characterized by technology-enabled processes, systems, and applications that expedite accurate, real-time health information, feedback, and skill development to advance patient-centered care. When designed and applied in a culturally competent manner, eHealth tools can be particularly beneficial for traditionally marginalized ethnic minority groups, such as Latinos, a group that has been identified as being at the forefront of emerging technology use in the United States. In this analytic overview, we describe current eHealth research that has been conducted with Latino patient populations. In addition, we highlight cultural and linguistic factors that should be considered during the design and implementation of eHealth interventions with this population. With increasing disparities in preventive care information, behaviors, and services, as well as health care access in general, culturally competent eHealth tools hold great promise to help narrow this gap and empower communities.
Collapse
Affiliation(s)
- David Victorson
- David Victorson, Jeremiah Smith, Lauren Languido, Elaine Shen, and Sandra Gutierrez are with the Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Evanston, IL. Jennifer Banas, Evelyn Cordero, and Lucia Flores are with the Department of Health, Physical Education, Recreation, and Athletics, Northeastern Illinois University, Chicago
| | | | | | | | | | | | | | | |
Collapse
|
|
11
|
Mikat-Stevens NA, Larson IA, Tarini BA. Primary-care providers' perceived barriers to integration of genetics services: a systematic review of the literature. Genet Med 2014; 17:169-76. [PMID: 25210938 DOI: 10.1038/gim.2014.101] [Citation(s) in RCA: 193] [Impact Index Per Article: 17.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/24/2014] [Accepted: 06/26/2014] [Indexed: 11/09/2022] Open
Abstract
PURPOSE We aimed to systematically review the literature to identify primary-care providers' perceived barriers against provision of genetics services. METHODS We systematically searched PubMed and ERIC using key and Boolean term combinations for articles published from 2001 to 2012 that met inclusion/exclusion criteria. Specific barriers were identified and aggregated into categories based on topic similarity. These categories were then grouped into themes. RESULTS Of the 4,174 citations identified by the search, 38 publications met inclusion criteria. There were 311 unique barriers that were classified into 38 categories across 4 themes: knowledge and skills; ethical, legal, and social implications; health-care systems; and scientific evidence. Barriers most frequently mentioned by primary-care providers included a lack of knowledge about genetics and genetic risk assessment, concern for patient anxiety, a lack of access to genetics, and a lack of time. CONCLUSION Although studies reported that primary-care providers perceive genetics as being important, barriers to the integration of genetics medicine into routine patient care were identified. The promotion of practical guidelines, point-of-care risk assessment tools, tailored educational tools, and other systems-level strategies will assist primary-care providers in providing genetics services for their patients.
Collapse
Affiliation(s)
| | - Ingrid A Larson
- Division of General Pediatrics, The Children's Mercy Hospitals and Clinics, Kansas City, Missouri, USA
| | - Beth A Tarini
- Child Health Evaluation and Research Unit, Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA
| |
Collapse
|
|
12
|
Yvonne Chan YF, Nagurka R, Bentley S, Ordonez E, Sproule W. Medical utilization of kiosks in the delivery of patient education: a systematic review. Health Promot Perspect 2014; 4:1-8. [PMID: 25097831 DOI: 10.5681/hpp.2014.001] [Citation(s) in RCA: 10] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/14/2013] [Accepted: 11/02/2013] [Indexed: 11/17/2022] Open
Abstract
BACKGROUND The utilization of kiosks has previously been shown to be effective for collecting information, delivering educational modules, and providing access to health information. We discuss a review of current literature for the utilization of kiosks for the delivery of patient education. METHODS The criteria for inclusion in this literature review were: (1) study discusses the utilization of kiosks for patient health education; (2) study discusses the use of touch screens for patient health information; (3) published in English. Our review includes searches via MEDLINE databases and Google Scholar for the years 1996-2014. RESULTS Overall, 167 articles were screened for final eligibility, and after discarding duplicates and non-eligible studies with abstract. Full-text review of 28 articles was included in the final analysis. CONCLUSION The review of available literature demonstrates the effectiveness of touch screen kiosks to educate patients and to improve healthcare, both at a performance and cost advantage over other modes of patient education.
Collapse
Affiliation(s)
- Yu-Feng Yvonne Chan
- Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, USA
| | - Roxanne Nagurka
- Department of Emergency Medicine, Rutgers, New Jersey Medical School, New Jersey, USA
| | - Suzanne Bentley
- Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, USA
| | - Edgardo Ordonez
- Department of Medicine, Section of Emergency Medicine, Baylor College of Medicine, Texas, USA
| | - William Sproule
- Department of Emergency Medicine, Rutgers, New Jersey Medical School, New Jersey, USA
| |
Collapse
|
|
13
|
Pritzlaff M, Yorczyk A, Robinson LS, Pirzadeh-Miller S, Lin T, Euhus D, Ross TS. An internal performance assessment of CancerGene Connect: an electronic tool to streamline, measure and improve the genetic counseling process. J Genet Couns 2014; 23:1034-44. [PMID: 24916850 DOI: 10.1007/s10897-014-9732-5] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/19/2013] [Accepted: 05/14/2014] [Indexed: 11/24/2022]
Abstract
CancerGene Connect (CGC) is a web-based program that combines the collection of family and medical history, cancer risk assessment, psychosocial assessment, report templates, a result tracking system, and a patient follow up system. The performance of CGC was assessed in several ways: pre-appointment completion data analyzed for demographic and health variables; a time study to assess overall time per case and to compare the data entry by the genetic counselor compared to the patient, and a measured quality assessment of the program via observation and interview of patients. Prior to their appointment, 52.3% of 2,414 patients completed the online patient questionnaire section of CGC. There were significant differences in completion rates among racial and ethnic groups. County hospital patients were less likely to complete the questionnaire than insured patients (p < 0.0001); and likewise uninsured patients and patients with Medicare/Medicaid were less likely to complete the questionnaire than private patients (p < 0.0001). The average genetic counseling time per case was 82 min, with no significant differences whether the counselor or the patient completed CGC. CGC reduces genetic counselor time by approximately 14-46% compared to average time per case using traditional risk assessment and documentation methods previously reported. All surveyed users felt the questionnaire was easy to understand. CGC is an effective tool that streamlines workflow, and provides a standardized data collection tool that can be used to evaluate and improve the genetic counseling process.
Collapse
Affiliation(s)
- Mary Pritzlaff
- Department of Cancer Genetics, University of Texas Southwestern Medical Center's Simmons Comprehensive Cancer Center, Dallas and Moncrief Cancer Institute, Dallas, TX, USA
| | | | | | | | | | | | | |
Collapse
|
|
14
|
Courtney RJ, Paul CL, Sanson-Fisher RW, Macrae FA, Carey ML, Attia J, McEvoy M. Individual- and provider-level factors associated with colorectal cancer screening in accordance with guideline recommendation: a community-level perspective across varying levels of risk. BMC Public Health 2013; 13:248. [PMID: 23514586 PMCID: PMC3607924 DOI: 10.1186/1471-2458-13-248] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/20/2011] [Accepted: 01/17/2013] [Indexed: 12/31/2022] Open
Abstract
BACKGROUND Participation rates in colorectal cancer screening (CRC) are low. Relatively little is known about screening uptake across varying levels of risk and across population groups. The purpose of the current study was to identify factors associated with (i) ever receiving colorectal cancer (CRC) testing; (ii) risk-appropriate CRC screening in accordance with guidelines; and (iii) recent colonoscopy screening. METHODS 1592 at-risk persons (aged 56-88 years) were randomly selected from the Hunter Community Study (HCS), Australia. Participants self-reported family history of CRC was used to quantify risk in accordance with national screening guidelines. RESULTS 1117 participants returned a questionnaire; 760 respondents were eligible for screening and analysis. Ever receiving CRC testing was significantly more likely for persons: aged 65-74 years; who had discussed with a doctor their family history of CRC or had ever received screening advice. For respondents "at or slightly above average risk", guideline-appropriate screening was significantly more likely for persons: aged 65-74 years; with higher household income; and who had ever received screening advice. For respondents at "moderately or potentially high risk", guideline-appropriate screening was significantly more likely for persons: with private health insurance and who had discussed their family history of CRC with a doctor. Colonoscopy screening was significantly more likely for persons: who had ever smoked; discussed their family history of CRC with a doctor; or had ever received screening advice. CONCLUSIONS The level of risk-appropriate screening varied across populations groups. Interventions that target population groups less likely to engage in CRC screening are pivotal for decreasing screening inequalities.
Collapse
Affiliation(s)
- Ryan J Courtney
- The Priority Research Centre for Health Behaviour,School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Callaghan, Australia.
| | | | | | | | | | | | | |
Collapse
|
|
15
|
Courtney RJ, Paul CL, Carey ML, Sanson-Fisher RW, Macrae FA, D'Este C, Hill D, Barker D, Simmons J. A population-based cross-sectional study of colorectal cancer screening practices of first-degree relatives of colorectal cancer patients. BMC Cancer 2013; 13:13. [PMID: 23305355 PMCID: PMC3556153 DOI: 10.1186/1471-2407-13-13] [Citation(s) in RCA: 42] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/15/2012] [Accepted: 12/27/2012] [Indexed: 12/14/2022] Open
Abstract
Background The aim of this study was to determine the proportions and predictors of first-degree relatives (FDRs) of colorectal cancer (CRC) patients (i) ever receiving any CRC testing and (ii) receiving CRC screening in accordance with CRC screening guidelines. Methods Colorectal cancer patients and their FDRs were recruited through the population-based Victorian Cancer Registry, Victoria, Australia. Seven hundred and seven FDRs completed telephone interviews. Of these, 405 FDRs were deemed asymptomatic and eligible for analysis. Results Sixty-nine percent of FDRs had ever received any CRC testing. First-degree relatives of older age, those with private health insurance, siblings and FDRs who had ever been asked about family history of CRC by a doctor were significantly more likely than their counterparts to have ever received CRC testing. Twenty-five percent of FDRs “at or slightly above average risk” were adherent to CRC screening guidelines. For this group, adherence to guideline-recommended screening was significantly more likely to occur for male FDRs and those with a higher level of education. For persons at “moderately increased risk” and “potentially high risk”, 47% and 49% respectively adhered to CRC screening guidelines. For this group, guideline-recommended screening was significantly more likely to occur for FDRs who were living in metropolitan areas, siblings, those married or partnered and those ever asked about family history of CRC. Conclusions A significant level of non-compliance with screening guidelines was evident among FDRs. Improved CRC screening in accordance with guidelines and effective systematic interventions to increase screening rates among population groups experiencing inequality are needed. Trial Registration Australian and New Zealand Clinical Trial Registry: ACTRN12609000628246
Collapse
Affiliation(s)
- Ryan J Courtney
- Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, University of Newcastle, Callaghan, Australia.
| | | | | | | | | | | | | | | | | |
Collapse
|
|
16
|
Islam MM, Topp L, Conigrave KM, van Beek I, Maher L, White A, Rodgers C, Day CA. The reliability of sensitive information provided by injecting drug users in a clinical setting: Clinician-administered versus audio computer-assisted self-interviewing (ACASI). AIDS Care 2012; 24:1496-503. [PMID: 22452446 DOI: 10.1080/09540121.2012.663886] [Citation(s) in RCA: 62] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/28/2022]
Affiliation(s)
- M. Mofizul Islam
- a School of Public Health & Community Medicine , University of New South Wales , Sydney , Australia
- b Drug Health Service , Royal Prince Alfred Hospital , Sydney , Australia
| | - Libby Topp
- c The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) , University of New South Wales , Sydney , Australia
| | - Katherine M. Conigrave
- b Drug Health Service , Royal Prince Alfred Hospital , Sydney , Australia
- d Sydney Medical School , University of Sydney , Sydney , Australia
- e National Drug and Alcohol Research Centre , University of New South Wales , Sydney , Australia
| | | | - Lisa Maher
- c The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) , University of New South Wales , Sydney , Australia
| | - Ann White
- g Redfern Harm Minimisation Clinic , Local Health District, Sydney , Australia
| | | | - Carolyn A. Day
- d Sydney Medical School , University of Sydney , Sydney , Australia
| |
Collapse
|
|
17
|
Courtney RJ, Paul CL, Sanson-Fisher RW, Macrae FA, Carey ML, Attia J, McEvoy M. Colorectal cancer risk assessment and screening recommendation: a community survey of healthcare providers' practice from a patient perspective. BMC FAMILY PRACTICE 2012; 13:17. [PMID: 22414115 PMCID: PMC3323420 DOI: 10.1186/1471-2296-13-17] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 11/28/2011] [Accepted: 03/14/2012] [Indexed: 01/14/2023]
Abstract
Background Family history is a common risk factor for colorectal cancer (CRC), yet it is often underused to guide risk assessment and the provision of risk-appropriate CRC screening recommendation. The aim of this study was to identify from a patient perspective health care providers' current practice relating to: (i) assessment of family history of CRC; (ii) notification of "increased risk" to patients at "moderately/potentially high" familial risk; and (iii) recommendation that patients undertake CRC screening. Methods 1592 persons aged 56-88 years randomly selected from the Hunter Community Study (HCS), New South Wales, Australia were mailed a questionnaire. 1117 participants (70%) returned a questionnaire. Results Thirty eight percent of respondents reported ever being asked about their family history of CRC. Ever discussing family history of CRC with a health care provider was significantly more likely to occur for persons with a higher level of education, who had ever received screening advice and with a lower physical component summary score. Fifty one percent of persons at "moderately/potentially high risk" were notified of their "increased risk" of developing CRC. Thirty one percent of persons across each level of risk had ever received CRC screening advice from a health care provider. Screening advice provision was significantly more likely to occur for persons who had ever discussed their family history of CRC with a health care provider and who were at "moderately/potentially high risk". Conclusions Effective interventions that integrate both the assessment and notification of familial risk of CRC to the wider population are needed. Systematic and cost-effective mechanisms that facilitate family history collection, risk assessment and provision of screening advice within the primary health care setting are required.
Collapse
Affiliation(s)
- Ryan J Courtney
- The Priority Research Centre for Health Behaviour, School of Medicine and Public Health, Faculty of Health, The University of Newcastle, Newcastle, Australia.
| | | | | | | | | | | | | |
Collapse
|
|
18
|
Impact of computer-assisted data collection, evaluation and management on the cancer genetic counselor's time providing patient care. Fam Cancer 2011; 10:381-9. [PMID: 21240560 DOI: 10.1007/s10689-011-9417-2] [Citation(s) in RCA: 8] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Abstract
Cancer genetic counseling sessions traditionally encompass collecting medical and family history information, evaluating that information for the likelihood of a genetic predisposition for a hereditary cancer syndrome, conveying that information to the patient, offering genetic testing when appropriate, obtaining consent and subsequently documenting the encounter with a clinic note and pedigree. Software programs exist to collect family and medical history information electronically, intending to improve efficiency and simplicity of collecting, managing and storing this data. This study compares the genetic counselor's time spent in cancer genetic counseling tasks in a traditional model and one using computer-assisted data collection, which is then used to generate a pedigree, risk assessment and consult note. Genetic counselor time spent collecting family and medical history and providing face-to-face counseling for a new patient session decreased from an average of 85-69 min when using the computer-assisted data collection. However, there was no statistically significant change in overall genetic counselor time on all aspects of the genetic counseling process, due to an increased amount of time spent generating an electronic pedigree and consult note. Improvements in the computer program's technical design would potentially minimize data manipulation. Certain aspects of this program, such as electronic collection of family history and risk assessment, appear effective in improving cancer genetic counseling efficiency while others, such as generating an electronic pedigree and consult note, do not.
Collapse
|
|
19
|
Smith PH, Homish GG, Barrick C, Grier NL. Using touch-screen technology to assess smoking in a low-income primary care clinic: a pilot study. Subst Use Misuse 2011; 46:1750-4. [PMID: 21974691 DOI: 10.3109/10826084.2011.618999] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/13/2022]
Abstract
This pilot study examined the use of a touch-screen tablet personal computer to assess smoking and alcohol use among low-income primary care patients (N = 100) and tested cross-method consistency with a paper assessment. Data were collected in 2009. A touch-screen survey assessed smoking, alcohol use, partner smoking, and acceptability. A separate paper survey assessed smoking, partner smoking, and acceptability. The touch-screen assessment was highly acceptable and reliable. Implications and limitations are noted. Future research should explore the use of touch-screen technology for clinical endeavors requiring a quick assessment of substance use. There was no outside funding for this study.
Collapse
Affiliation(s)
- Philip H Smith
- Department of Community Health and Health Behavior, University at Buffalo, The State University of New York, Buffalo, New York 14214, USA.
| | | | | | | |
Collapse
|
|
20
|
Joshi A, Weng W, Lichenstein R, Arora M, Sears A. Prospective tracking of a pediatric emergency department e-kiosk to deliver asthma education. Health Informatics J 2010; 15:282-95. [PMID: 20007653 DOI: 10.1177/1460458209345899] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
The study objective was to describe the prospective use of an interactive Patient Education and Motivation Tool (PEMT) placed within a pediatric emergency department (ED). A touch screen computer was utilized to deliver asthma education to children and their parents/guardians during their acute asthma visit between November 2006 and April 2007. Ninety-nine participants were enrolled in this prospective non-randomized pre-post study. PEMT comprised three key components: screening, learning and evaluation. The tool tracked the date the system was used, user characteristics, asthma knowledge, amount of time spent on each screen, and navigational patterns of individuals using the program. The results showed that baseline asthma knowledge had positive association with age and negative association with time spent in the learning module. There was negative association between age and time spent in the learning module. Thus PEMT was effective in improving the asthma knowledge of young patients and those having lower baseline knowledge.
Collapse
Affiliation(s)
- Ashish Joshi
- Department of Information Systems, University of Maryland-Baltimore County, 1000 Hilltop Circle, Baltimore, MD 21250, USA.
| | | | | | | | | |
Collapse
|
|
21
|
Bonevski B, Campbell E, Sanson-Fisher RW. The validity and reliability of an interactive computer tobacco and alcohol use survey in general practice. Addict Behav 2010; 35:492-8. [PMID: 20092954 DOI: 10.1016/j.addbeh.2009.12.030] [Citation(s) in RCA: 20] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/01/2009] [Revised: 11/18/2009] [Accepted: 12/21/2009] [Indexed: 01/05/2023]
Abstract
BACKGROUND Uncertainty regarding the accuracy of the computer as a data collection or patient screening tool persists. Previous research evaluating the validity of computer health surveys have tended to compare those responses to that of paper survey or clinical interview (as the gold standard). This approach is limited as it assumes that the paper version of the self-report survey is valid and an appropriate gold standard. OBJECTIVES First, to compare the accuracy of computer and paper methods of assessing self-reported smoking and alcohol use in general practice with biochemical measures as gold standard. Second, to compare the test re-test reliability of computer administration, paper administration and mixed methods of assessing self-reported smoking status and alcohol use in general practice. METHODS A randomised cross-over design was used. Consenting patients were randomly assigned to one of four groups; Group 1. C-C : completing a computer survey at the time of that consultation (Time 1) and a computer survey 4-7 days later (Time 2); Group 2. C-P: completing a computer survey at Time 1 and a paper survey at Time 2; Group 3. P-C: completing a paper survey at Time 1 and a computer survey at Time 2; and Group 4. P-P: completing a paper survey at Time 1 and 2. At Time 1 all participants also completed biochemical measures to validate self-reported smoking status (expired air carbon monoxide breath test) and alcohol consumption (ethyl alcohol urine assay). RESULTS Of the 618 who were eligible, 575 (93%) consented to completing the Time 1 surveys. Of these, 71% (N=411) completed Time 2 surveys. Compared to CO, the computer smoking self-report survey demonstrated 91% sensitivity, 94% specificity, 75% positive predictive value (PPV) and 98% negative predictive value (NPV). The equivalent paper survey demonstrated 86% sensitivity, 95% specificity, 80% PPV, and 96% NPV. Compared to urine assay, the computer alcohol use self-report survey demonstrated 92% sensitivity, 50% specificity, 10% PPV and 99% NPV. The equivalent paper survey demonstrated 75% sensitivity, 57% specificity, 6% PPV, and 98% NPV. Level of agreement of smoking self-reports at Time 1 and Time 2 revealed kappa coefficients ranging from 0.95 to 0.98 in each group and hazardous alcohol use self-reports at Time 1 and Time 2 revealed kappa coefficients ranging from 0.90 to 0.96 in each group. CONCLUSION The collection of self-reported health risk information is equally accurate and reliable using computer interface in the general practice setting as traditional paper survey. Computer survey appears highly reliable and accurate for the measurement of smoking status. Further research is needed to confirm the adequacy of the quantity/frequency measure in detecting those who drink alcohol. Interactive computer administered health surveys offer a number of advantages to researchers and clinicians and further research is warranted.
Collapse
Affiliation(s)
- B Bonevski
- Centre for Health Research and Psycho-oncology, Cancer Council NSW and The University of Newcastle, Callaghan, NSW 2308, Australia
| | | | | |
Collapse
|
|
22
|
Wang C, Gallo RE, Fleisher L, Miller SM. Literacy assessment of family health history tools for public health prevention. Public Health Genomics 2010; 14:222-37. [PMID: 20090283 PMCID: PMC2891255 DOI: 10.1159/000273689] [Citation(s) in RCA: 30] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/05/2023] Open
Abstract
OBJECTIVES This study aimed to systematically identify and evaluate the readability and document complexity of currently available family history tools for the general public. METHODS Three steps were undertaken to identify family history tools for evaluation: (a) Internet searches, (b) expert consultation, and (c) literature searches. Tools identified were assessed for readability using the Simple Measure of Gobbledygook (SMOG) readability formula. The complexity of documents (i.e., forms collecting family history information) was assessed using the PMOSE/IKIRSCH document readability formula. RESULTS A total of 78 tools were identified, 47 of which met the criteria for inclusion. SMOG reading grade levels for multimedia-based tools ranged from 10.1 to 18.3, with an average score of 13.6. For print-based tools, SMOG ranged from 8.7 to 14.1, with an average score of 12.0. Document complexity ranged from very low complexity (level 1 proficiency) to high complexity (level 4 proficiency). CONCLUSION The majority of tools are written at a reading grade level that is beyond the 8th grade average reading level in the United States. The lack of family history tools that are easy to read or use may compromise their potential effectiveness in identifying individuals at increased risk for chronic diseases in the general population.
Collapse
Affiliation(s)
- C Wang
- Boston University School of Public Health, Boston, MA 02118, USA.
| | | | | | | |
Collapse
|
|
23
|
Kelly KM, Sturm AC, Kemp K, Holland J, Ferketich AK. How can we reach them? Information seeking and preferences for a cancer family history campaign in underserved communities. JOURNAL OF HEALTH COMMUNICATION 2009; 14:573-589. [PMID: 19731128 DOI: 10.1080/10810730903089580] [Citation(s) in RCA: 15] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/28/2023]
Abstract
Individuals with a family history of cancer are at elevated risk for the disease, and web-based tools are available to assist in assessing risk. Preferences for a potential campaign to promote awareness of the role of family history in cancer risk were sought, guided by McGuire's Input-Output Persuasion Model. A randomized telephone survey administered to five underserved communities assessed potential campaign messages, channels, sources, receivers, and destinations and use of the Internet (n = 101). Information sources sought about hereditary cancer and their predictors were assessed. Nearly half of the sample was African American and had annual income below $25,000. Most (59%) had Internet access at home. Few differences emerged as a function of race (African American vs. Other). The Internet was the most common (43%) first source sought for hereditary cancer information, followed by physicians (23%). In univariate multinomial logistic regression models, those with a high school education or more and those with greater family history (trend) were more likely than those without to choose the Internet as their first source of information over physicians. Our survey provided a wealth of information for understanding how to best launch our family history cancer risk communication campaign. Education level affected information seeking, and efforts are under way to lessen this potential barrier.
Collapse
Affiliation(s)
- Kimberly M Kelly
- Human Cancer Genetics, The Ohio State University, Columbus, Ohio, USA.
| | | | | | | | | |
Collapse
|
|
24
|
The role of health kiosks in 2009: literature and informant review. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2009; 6:1818-55. [PMID: 19578463 PMCID: PMC2705220 DOI: 10.3390/ijerph6061818] [Citation(s) in RCA: 35] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 05/22/2009] [Accepted: 06/08/2009] [Indexed: 11/20/2022]
Abstract
Kiosks can provide patients with access to health systems in public locations, but with increasing home Internet access their usefulness is questioned. A literature and informant review identified kiosks used for taking medical histories, health promotion, self assessment, consumer feedback, patient registration, patient access to records, and remote consultations. Sited correctly with good interfaces, kiosks can be used by all demographics but many ‘projects’ have failed to become routine practice. A role remains for: (a) integrated kiosks as part of patient ‘flow’, (b) opportunistic kiosks to catch people’s attention. Both require clear ‘ownership’ to succeed.
Collapse
|
|
25
|
Vadaparampil ST, Quinn GP, Miree CA, Brzosowicz J, Carter B, Laronga C. Recall of and reactions to a surgeon referral letter for BRCA genetic counseling among high-risk breast cancer patients. Ann Surg Oncol 2009; 16:1973-81. [PMID: 19408048 DOI: 10.1245/s10434-009-0479-4] [Citation(s) in RCA: 28] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/20/2008] [Revised: 01/13/2009] [Accepted: 01/14/2009] [Indexed: 12/22/2022]
Abstract
BACKGROUND The oncology care setting represents an important opportunity to identify and refer women at increased risk for hereditary breast and ovarian cancer. However, little is known about the effectiveness of provider approaches to inform patients of hereditary cancer risk or patient uptake of genetic counseling (GC). This qualitative study examined the impact of a surgeon referral letter on recently diagnosed breast cancer patients' uptake of BRCA GC. METHODS Qualitative open-ended, in-depth interviews were conducted with 26 high-risk breast cancer patients sent a referral letter for BRCA GC by their surgeon. Data were analyzed by a grounded theory approach. RESULTS Most women (approximately 80%) recalled receiving the letter, and 62% of all (n = 16) women pursued GC. Recall of the letter did not seem to be associated with uptake of GC (P = .49, Fisher's exact test). The results highlight key areas for improvement that may help increase the impact of the letter. Half of the women in this sample believed that the letter was sent to all breast cancer patients, rather than those with specific risk factors. Few women mentioned any implications for the information obtained during GC or testing regarding their current breast cancer diagnosis or treatment. Of the women who did not attend, many perceived that dealing with the GC and testing process in the midst of a cancer diagnosis and treatment was overwhelming. Among the women who had chosen not to attend GC, most stated they would reconsider after completing their treatment. CONCLUSIONS Patient recall of a surgeon referral letter does not seem to increase the number of high-risk women who attend GC after a breast cancer diagnosis. The letter approach in its current format does not seem to be a wholly effective means of communicating with some patients who may be overwhelmed by their cancer diagnosis or unaware that GC and testing may have implications for their current treatment decisions, possibly resulting in a missed opportunity to engage in informed decision making.
Collapse
|
|
26
|
Roche MI, Skinner D. How parents search, interpret, and evaluate genetic information obtained from the internet. J Genet Couns 2009; 18:119-29. [PMID: 18937062 PMCID: PMC3114943 DOI: 10.1007/s10897-008-9198-4] [Citation(s) in RCA: 37] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/03/2008] [Accepted: 09/19/2008] [Indexed: 11/30/2022]
Abstract
This study describes how parents of a child referred for genetic services searched the Internet for information, summarizes how they interpreted and evaluated the information they obtained, and identifies barriers that they encountered. Audio-taped interviews were conducted with 100 ethnically diverse families referred to a pediatric genetics clinic. After transcription, coded text was entered into a software program (QSR N6) for searching and data retrieval. Matrices were created to systematically categorize and compare families' Internet use. Eighty-three percent of families obtained Internet information about the diagnosis, the clinic visit, and/or treatment and services. Those not conducting searches lacked access, Internet experience, or a diagnostic term and had lower incomes and less education, regardless of ethnicity. Families sought information in preparation for the clinic visit but barriers to obtaining and interpreting relevant information were common. Parents' Internet searching experiences illustrate common barriers to obtaining and understanding genetic information. Identifying them can help genetic counselors facilitate parents' searches for relevant information.
Collapse
Affiliation(s)
- Myra I Roche
- Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
| | | |
Collapse
|
|
27
|
Meilleur KG, Littleton-Kearney MT. Interventions to improve patient education regarding multifactorial genetic conditions: a systematic review. Am J Med Genet A 2009; 149A:819-30. [PMID: 19291763 PMCID: PMC2776676 DOI: 10.1002/ajmg.a.32723] [Citation(s) in RCA: 36] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022]
Abstract
The careful education of patients with complex genetic disease is essential. However, healthcare providers often have limited time to spend providing thorough genetic education. Furthermore, the number of healthcare professionals possessing strong genetics training may be inadequate to meet increasing patient demands. Due to such constraints, several interventions have been investigated over the past decade to identify potential resources for the facilitation of this specific type of patient education. This systematic literature review of these interventions for patient education attempts to elucidate the answer to the question: is there sufficient evidence for best practice for delivering genetic information to patients with multifactorial conditions? The various interventions (CD-ROM, group counseling, video/decision aid, and miscellaneous) were analyzed in terms of quality criteria and achievement of specific outcomes and were rated according to the Stetler model for evidence-based practice. Seven main outcomes were evaluated: (1) objective and subjective knowledge assessment, (2) psychological measures (general anxiety, depression, stress, cancer worry), (3) satisfaction/effectiveness of intervention, (4) time spent in counseling (time spent on basic genetic information vs. specific concerns), (5) decision-making/intent to undergo genetic testing, (6) treatment choice and value of that choice, and, finally (7) risk perception. Overall, the computer interventions resulted in more significant findings that were beneficial than any other category followed by the video category, although the group and miscellaneous categories did not measure all of the outcomes reported by the other two categories. Nevertheless, while these groups had neutral or negative findings in some of the outcomes, the computer intervention group showed significant improvement in genetics knowledge, psychological measures, satisfaction/effectiveness, time spent with counselor, and decision/intent to undergo testing.
Collapse
|
|
28
|
Simon C, Acheson L, Burant C, Gerson N, Schramm S, Lewis S, Wiesner G. Patient interest in recording family histories of cancer via the Internet. Genet Med 2008; 10:895-902. [PMID: 19092442 PMCID: PMC3342847 DOI: 10.1097/gim.0b013e31818de708] [Citation(s) in RCA: 14] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022] Open
Abstract
PURPOSE This study investigated the interest of mammogram patients in using electronic tools for recording their family histories of cancer (FHC). METHODS Semistructured interviews were conducted with 65 patients visiting a breast center at a referral hospital in Cleveland, Ohio. RESULTS Most (n = 40; 62%) respondents expressed interest in using an electronic tool for recording FHC and associated its use with a range of benefits to themselves, their families, and their health care providers. Women who were not interested (n = 25; 38%) in using an electronic tool for recording FHC were concerned about privacy issues, computer proficiency, and giving up the opportunity to provide family history information directly to the health care provider. Interest in using an electronic tool for recording FHC was not significantly associated with age, race, level of education or income, personal or FHC, or Internet access and frequency of use. CONCLUSION Electronic documentation of FHC was seen as largely desirable. However, clinical services to facilitate systematic family history documentation are likely to require more than one avenue for collecting and communicating this information, as not everyone who wants to provide a FHC to a health care provider is comfortable using the Internet to do so.
Collapse
Affiliation(s)
- Christian Simon
- Department of Bioethics, Case Western Reserve University, Cleveland, Ohio, USA.
| | | | | | | | | | | | | |
Collapse
|
|
29
|
Promotion of cancer family history awareness: Jameslink Cancer Risk Assessment Tool at community health fairs. J Genet Couns 2008; 17:274-82. [PMID: 18484172 DOI: 10.1007/s10897-007-9146-8] [Citation(s) in RCA: 15] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/25/2007] [Accepted: 12/16/2007] [Indexed: 10/22/2022]
Abstract
This article examines the impact of providing personalized familial cancer risk assessments with the Jameslink Cancer Risk Assessment Tool. Users of the Jameslink (N = 166) at eight community health fairs completed a survey including demographic, psychosocial and behavioral variables to better understand responses to the Jameslink. No differences were found between whites and those of other races for variables of interest, indicating suitability of the Jameslink for diverse populations. Those with higher Jameslink-assessed risk had higher perceived risk of cancer. Approximately half (53.8%) reported that they would speak to their physician about their Jameslink-assessed risk. A regression found Jameslink-assessed risk, cancer worry, and perceived risk of cancer predicted intentions to speak to a physician about their risk. In addition, open-ended data provided suggestions to improve the Jameslink. Changes in content and format were suggested; however most were happy with the program and encouraged its promotion. The lack of findings for differences as a function of race bolsters the use of computerized Cancer Risk Assessment Tools in diverse communities. The positive feedback of users and the close association between cancer risk assessment, perceived risk, and intention to speak to a physician are supportive of continued use and development of Cancer Risk Assessment Tools in the community to promote awareness of cancer risk.
Collapse
|
|
30
|
Sturm AC, Sweet K, Schwirian PM, Koenig C, Westman J, Kelly KM. Lessons Learned while Developing a Cancer Family History Campaign in the Columbus, Ohio Metropolitan Area. ACTA ACUST UNITED AC 2008; 11:304-10. [DOI: 10.1159/000121402] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/19/2022]
|
|
31
|
Kelly K, Leventhal H, Marvin M, Toppmeyer D, Baran J, Schwalb M. Cancer genetics knowledge and beliefs and receipt of results in Ashkenazi Jewish individuals receiving counseling for BRCA1/2 mutations. Cancer Control 2007; 11:236-44. [PMID: 15284715 DOI: 10.1177/107327480401100405] [Citation(s) in RCA: 29] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/22/2022] Open
Abstract
BACKGROUND Genetic counseling for BRCA1 and BRCA2 mutations (mutations associated with increased risk of breast-ovarian cancer) endeavors to communicate information that will help individuals make informed decisions regarding genetic testing. METHODS This repeated-measures study examined cancer genetics knowledge and beliefs before and after counseling and their relationship to receipt of results for BRCA1/2 mutations in 120 highly educated Ashkenazi Jewish individuals. RESULTS A repeated-measures analysis examined change in knowledge and beliefs regarding personal behavior, mechanisms of cancer inheritance, meaning of a positive result, practitioner knowledge, frequency of inherited cancer, and meaning of a negative result from pre- to post-counseling with the between subjects variables of education (with/without graduate training) and personal history of breast or ovarian cancer (yes/no), and risk of having a mutation entered as a covariate. Mechanisms of cancer inheritance, meaning of a positive result, and practitioner knowledge increased from pre- to post-counseling. Those with graduate training had higher ratings of mechanisms of cancer inheritance ratings and lower ratings of frequency of inherited cancers than those without. Mann-Whitney U tests found those testing had higher ratings in mechanisms of cancer inheritance, specifically in the association of multiple primary cancers with hereditary cancer, than those not testing. CONCLUSIONS Genetic counseling is helpful in improving overall knowledge of cancer genetics even for highly educated individuals. Particular areas of knowledge improvement should be explored in relation to receipt of results, especially to further elucidate the relationship of knowledge of the association of multiple primary cancers with hereditary cancer to receipt of test results.
Collapse
Affiliation(s)
- Kimberly Kelly
- Department of Behavioral Science, University of Kentucky, College of Medicine, Lexington, KY 40536-0086, USA.
| | | | | | | | | | | |
Collapse
|
|
32
|
Murff HJ, Greevy RA, Syngal S. The comprehensiveness of family cancer history assessments in primary care. Public Health Genomics 2007; 10:174-80. [PMID: 17575462 DOI: 10.1159/000101759] [Citation(s) in RCA: 54] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022] Open
Abstract
BACKGROUND Accurate family history information is required for adequate breast and colorectal cancer risk assessments. Few studies have examined the comprehensiveness of the family medical history interview in primary care. METHODS We compared family cancer history information collected through a self-completed survey with that documented within medical charts for 310 patients. RESULTS Forty-three percent (18/42) of individuals at increased risk for breast or colorectal cancer based on their family history had documentation of this risk within their chart. Age of cancer diagnosis was recorded for 40% (50/124) of affected relatives identified by chart review compared with 81% (203/252) identified through the survey (p < 0.0001). CONCLUSIONS Over half of the individuals at increased risk for breast or colorectal cancer based on their family history did not have documentation of this risk within their medical record, and the age of relatives at diagnosis was frequently missing.
Collapse
Affiliation(s)
- Harvey J Murff
- Division of General Internal Medicine, Vanderbilt University Medical Center, Nashville, TN 37212-2637, USA.
| | | | | |
Collapse
|
|
33
|
Abstract
Approximately one in three individuals will be affected by cancer in their lifetime in the United States, and some are at elevated risk because of family history. Although assessment of family history of cancer and cancer risk is the standard of care, the current health-care system appears unable to meet this need. Because individuals are increasingly using the Internet, web-based cancer risk assessment tools (CRATs) may provide a way to meet this need. The purpose of this review was to evaluate the types of familial CRATs available on the Internet and their nature. The current review evaluated five CRATs identified through an Internet search based on (i) their ability to identify those at the highest risk of cancer (i.e. those with hereditary cancer syndromes), (ii) their strengths and limitations based on criteria adapted from Rich and colleagues (2004, 2005), (iii) their readability based on four readability calculations, and (iv) their quality based on criteria from Health on the Net. The general limitations of CRATs as a whole were also delineated, including concerns about availability to those who are poor and underserved and those who have lower levels of literacy. Recommendations for future tools include assessing risk for a greater number of diseases, using theoretically driven approaches to increase the likelihood that individuals will engage in appropriate health behaviors, and making a greater effort to reach diverse populations.
Collapse
Affiliation(s)
- K M Kelly
- Human Cancer Genetics, Department of Molecular Virology, Immunology, and Medical Genetics, The Ohio State University, Columbus, OH 43210, USA.
| | | |
Collapse
|
|
34
|
Kelly KM, Shedlosky-Shoemaker R, Porter K, Remy A, DeSimone P, Andrykowski MA. Cancer Family History Reporting: Impact of Method and Psychosocial Factors. J Genet Couns 2007; 16:373-82. [PMID: 17318453 DOI: 10.1007/s10897-006-9076-x] [Citation(s) in RCA: 19] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/24/2006] [Accepted: 11/08/2006] [Indexed: 11/25/2022]
Abstract
Family history is one the greatest risk factors for disease and one of the most important informational tools in medical genetics for the purpose of diagnosis, risk assessment, prevention and treatment. However, research is needed on the comparability of different methods of cancer family history assessment and the influence of psychosocial factors in family history reports. The purpose of this study was to determine if individuals had discrepancies between written and interview reports of cancer family history and the role of psychosocial factors in these discrepancies. Oncology patients (n=104) were administered a survey to assess psychosocial factors (i.e., information-seeking, worry, perceived risk, and health literacy) and were asked to provide family history in a written and an interview form. Randomization determined which form individuals received first. No differences in the amount of missing data or the amount of unspecified data were noted between the written and interview method. Psychosocial factors did not differentiate between those who had discrepancies in family history reports and those who did not have discrepancies in family history reports; although there was a trend for those with lower literacy and those who were blunters to be more discrepant on type of cancer diagnosis. In sum, this preliminary study indicates that written and interview methods of family history assessment for first degree relatives may be used interchangeably. The ability to use written methods will facilitate collection of basic family history information in the oncology clinic.
Collapse
Affiliation(s)
- Kimberly M Kelly
- Human Cancer Genetics, The Ohio State University, 646 Medical Research Facility, 420 W. 12th Avenue, Columbus, OH 43210, USA.
| | | | | | | | | | | |
Collapse
|
|
35
|
Gramling RE, Vidrine JI. Risk Communication During Screening for Genomic Breast Cancer Susceptibility. Am J Lifestyle Med 2007. [DOI: 10.1177/1559827606295453] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
Screening for genomic predisposition to diseases of adulthood is emerging in standard medical practice. Breast cancer predisposition testing provides a useful example for understanding the potential implications of risk-related screening in practice. Risk is an important and complex psychological construct that is understood differently both between scientific disciplines and between medical and lay persons. The process of establishing thresholds for classifying whether one's risk reaches levels warranting departure from standard preventive strategies is an important predictor of both physician feedback and patient interpretation of their risk. Messages about genomic breast cancer risk arising during the pedigree screening context are conveyed via explicit and implicit modes of communication. Best practices for communicating about genomic risk and the implications for health disparities related to screening for genomic susceptibility remain unknown. More work is urgently needed given the societal forces that are catalyzing population-based screening for genomic predisposition into the routine practice of preventive medicine.
Collapse
Affiliation(s)
- Robert E. Gramling
- Brown University Center for Primary Care and Prevention, Pawtucket, Rhode Island,
| | | |
Collapse
|
|
36
|
Acheson LS, Zyzanski SJ, Stange KC, Deptowicz A, Wiesner GL. Validation of a Self-Administered, Computerized Tool for Collecting and Displaying the Family History of Cancer. J Clin Oncol 2006; 24:5395-402. [PMID: 17088568 DOI: 10.1200/jco.2006.07.2462] [Citation(s) in RCA: 48] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022] Open
Abstract
Purpose A detailed family history is important for cancer risk assessment, but obtaining it is time consuming and infrequently accomplished in practice. The Genetic Risk Easy Assessment Tool (GREAT) conducts a computer-administered family history interview and immediately generates a pedigree diagram in digital form. The purpose of this study was to validate family cancer histories produced by patients using the computer tool in comparison with pedigrees made by genetic counselors. Methods Patients scheduled for genetics consultation recorded their family histories using the GREAT, separate from their genetic counseling session. The presence of each relative; presence, type, and age at diagnosis of cancers; and cancer geneticist's risk assessment were compared for 120 pairs of pedigrees produced by counselors versus computer tool. Results The automated telephone interview took a mean of 33.5 minutes and was highly acceptable to respondents. Ninety-four percent of first-degree relatives, 67% of second-degree relatives, and 38% of third-degree relatives were identical on paired pedigrees; computer-generated pedigrees included additional relatives. Sixty-three percent of all cancers were identified by both family histories, with 90% agreement on the type of cancer. There was very good agreement (κ = 0.70; correlation = 0.77) between the geneticist's breast cancer risk assessments based on computer versus counselors' pedigrees. In a subsample of 61 users, test-retest reliability for the computer-administered questionnaire was high (φ = 0.94 for cancers in first-degree and φ = 0.91 in second-degree relatives). Conclusion The GREAT computer-administered questionnaire provides an acceptable, reliable, and valid way of collecting an unverified but extensive family history of cancer and displaying it as a pedigree, in an entirely automated process.
Collapse
Affiliation(s)
- Louise S Acheson
- Department of Family Medicine, Comprehensive Cancer Center, Case Western Reserve University and University Hospitals of Cleveland, Cleveland, OH 44106-5036, USA.
| | | | | | | | | |
Collapse
|
|
37
|
Lairson DR, Chang YC, Bettencourt JL, Vernon SW, Greisinger A. Estimating development cost for a tailored interactive computer program to enhance colorectal cancer screening compliance. J Am Med Inform Assoc 2006; 13:476-84. [PMID: 16799126 PMCID: PMC1561793 DOI: 10.1197/jamia.m2067] [Citation(s) in RCA: 14] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/22/2023] Open
Abstract
The authors used an actual-work estimate method to estimate the cost of developing a tailored interactive computer education program to improve compliance with colorectal cancer screening guidelines in a large multi-specialty group medical practice. Resource use was prospectively collected from time logs, administrative records, and a design and computing subcontract. Sensitivity analysis was performed to examine the uncertainty of the overhead cost rate and other parameters. The cost of developing the system was Dollars 328,866. The development cost was Dollars 52.79 per patient when amortized over a 7-year period with a cohort of 1,000 persons. About 20% of the cost was incurred in defining the theoretic framework and supporting literature, constructing the variables and survey, and conducting focus groups. About 41% of the cost was for developing the messages, algorithms, and constructing program elements, and the remaining cost was to create and test the computer education program. About 69% of the cost was attributable to personnel expenses. Development cost is rarely estimated but is important for feasibility studies and ex-ante economic evaluations of alternative interventions. The findings from this study may aid decision makers in planning, assessing, budgeting, and pricing development of tailored interactive computer-based interventions.
Collapse
Affiliation(s)
- David R Lairson
- The University of Texas School of Public Health, Houston, TX 77030, USA.
| | | | | | | | | |
Collapse
|
|
38
|
Kreuter MW, Black WJ, Friend L, Booker AC, Klump P, Bobra S, Holt CL. Use of Computer Kiosks for Breast Cancer Education in Five Community Settings. HEALTH EDUCATION & BEHAVIOR 2006; 33:625-42. [PMID: 16923835 DOI: 10.1177/1090198106290795] [Citation(s) in RCA: 39] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
Finding ways to bring effective computer-based behavioral interventions to those with limited access to technology is a continuing challenge for health educators. Computer kiosks placed in community settings may help reach such populations. The Reflections of You kiosk generates individually tailored magazines on breast cancer and mammography and was adapted from an evidence-based intervention that increased mammography use in African American women. This usage study tracked patterns of use and characteristics of kiosk users in beauty salons, churches, neighborhood health centers, Laundromats, and social service agencies in St. Louis. Kiosks were used 4,527 times in 470 kiosk days at 40 different host sites. Highly significant differences among community settings were found in rates and patterns of kiosk use as well as user characteristics, breast cancer knowledge, and use of mammography. Findings inform strategic decision making about technology dissemination and community outreach to women needing information about breast cancer and mammography.
Collapse
Affiliation(s)
- Matthew W Kreuter
- Health Communication Research Laboratory, Department of Community Health, School of Public Health, Saint Louis University, 3545 Lafayette Ave., St. Louis, MO 63104, USA.
| | | | | | | | | | | | | |
Collapse
|
|
39
|
Wang C, Bowen DJ, Kardia SLR. Research and practice opportunities at the intersection of health education, health behavior, and genomics. HEALTH EDUCATION & BEHAVIOR 2005; 32:686-701. [PMID: 16148214 DOI: 10.1177/1090198105278827] [Citation(s) in RCA: 37] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/25/2022]
Abstract
Researchers and practitioners in health behavior and health education (HBHE) can play a pivotal leadership role in the integration of genomic advances to improve the public's health. The purpose of this article is to outline research and practice opportunities at the intersection of genomics and HBHE. We begin this article by briefly summarizing the existing evidence in the literature pertaining to the public's use of genetic services, the effectiveness of genetic counseling, and the impact of genetic testing. Following this, we outline and expand on several areas that we believe are ripe for further exploration, understanding, and public health application:(a) public understanding of genetic information, (b) interventions for health behavior change, and (c) public health assurance and advocacy. This analysis has identified the need to consider potential application efforts in genomics and HBHE from an ecological perspective, with an emphasis on multiple levels of intervention and analysis.
Collapse
Affiliation(s)
- Catharine Wang
- Department of Health Behavior and Health Education, and Michigan Center for Genomics and Public Health School of Public Health, University of Michigan, Ann Arbor, USA.
| | | | | |
Collapse
|
|
40
|
Dominguez FJ, Jones JL, Zabicki K, Smith BL, Gadd MA, Specht M, Kopans DB, Moore RH, Michaelson JS, Hughes KS. Prevalence of hereditary breast/ovarian carcinoma risk in patients with a personal history of breast or ovarian carcinoma in a mammography population. Cancer 2005; 104:1849-53. [PMID: 16136597 DOI: 10.1002/cncr.21393] [Citation(s) in RCA: 17] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/10/2022]
Abstract
BACKGROUND Identifying BRCA1 and BRCA2 mutation carriers is increasingly important as new management options show promise in decreasing morbidity and mortality in these women. The authors sought to determine the prevalence of family histories suggestive of a hereditary breast carcinoma syndrome in a cohort of patients with a personal history of breast and/or ovarian carcinoma presenting for mammography. METHODS The authors reviewed the family histories of all women with a history of breast or ovarian carcinoma presenting for mammography over a 37-week period. Using the Myriad model, the authors evaluated the prevalence of family histories with a > or = 10% risk of a BRCA1 or BRCA2 mutation. RESULTS During the period of the current study, 14,597 women completed a family history questionnaire. Of these women, 1764 had a personal history of breast or ovarian carcinoma, 86.6% had unilateral breast carcinoma, 4.6% had bilateral breast carcinoma, 8.2% had ovarian carcinoma, and 0.5% had both breast and ovarian carcinoma. Overall, 20.6% met the criteria for a > or = 10% risk of mutation according to the Myriad model. This incidence was higher among Ashkenazi women (47.3%) and among patients with a personal history of ovarian carcinoma (35.9%). CONCLUSIONS Application of the Myriad model to women with a personal history of breast and ovarian carcinoma suggested that approximately 1 in 5 of these women (20.6%) will have family histories suspicious for a genetic mutation. This risk was higher for Ashkenazi women and for those with a personal history of ovarian carcinoma. This prevalence was considerably higher than the rate reported among women with no personal history of cancer, and has significant implications for their management, as well as for the capacity for risk assessment and testing.
Collapse
Affiliation(s)
- Francisco J Dominguez
- Division of Surgical Oncology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts 02114, USA
| | | | | | | | | | | | | | | | | | | |
Collapse
|
|
41
|
Gramling R, Anthony D, Lowery J, Ballinger L, Ma D, Habbal R, Leighton N, Bowen D. Association between screening family medical history in general medical care and lower burden of cancer worry among women with a close family history of breast cancer. Genet Med 2005; 7:640-5. [PMID: 16301866 DOI: 10.1097/01.gim.0000187123.76699.e9] [Citation(s) in RCA: 12] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/11/2022] Open
Abstract
PURPOSE Soliciting family medical history (FMH) is the initial step in the process of screening for heritable cancer risk in medical care. We investigate whether recent solicitation of FMH in general medical care is associated with cancer worry among a sample of women having a first-degree relative with a breast cancer diagnosis. METHODS Surveys were mailed to women registered with the Cancer Genetics Network having a first-degree relative with a breast cancer diagnosis and a regular source of medical care. The independent measure consisted of two items for solicitation of FMH based on validated measures of clinical interactions with one's physician; the dependent measure was a novel measure of cancer worry based on validated patient-centered measure of distress; and the secondary measures were 6-point scales for perceived likelihood of developing breast cancer and perceived severity of breast cancer as a health outcome. RESULTS A total of 353 women responded and met eligibility criteria (76.4% minimum response rate). One fifth reported no cancer worry during the past 4 weeks. After adjustment for age, education, pedigree features, and clustering within families, recent FMH solicitation was associated with lower odds of cancer worry (odds ratio = 0.58; 95% confidence interval = 0.51-0.70). FMH solicitation was associated with lower perceptions of the severity of developing breast cancer but not with the perception of cancer likelihood. CONCLUSIONS Our data do not support the hypothesis that FMH solicitation in general medical practice causes cancer worry. In fact, we observed a protective association possibly explained by influences on perceptions of breast cancer severity. Prospective research among less select populations is necessary.
Collapse
|
|
42
|
Skinner CS, Rawl SM, Moser BK, Buchanan AH, Scott LL, Champion VL, Schildkraut JM, Parmigiani G, Clark S, Lobach DF, Bastian LA. Impact of the Cancer Risk Intake System on patient-clinician discussions of tamoxifen, genetic counseling, and colonoscopy. J Gen Intern Med 2005; 20:360-5. [PMID: 15857495 PMCID: PMC1490091 DOI: 10.1111/j.1525-1497.2005.40115.x] [Citation(s) in RCA: 24] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
The Cancer Risk Intake System (CRIS), a computerized program that "matches" objective cancer risks to appropriate risk management recommendations, was designed to facilitate patient-clinician discussion. We evaluated CRIS in primary care settings via a single-group, self-report, pretest-posttest design. Participants completed baseline telephone surveys, used CRIS during clinic visits, and completed follow-up surveys 1 to 2 months postvisit. Compared with proportions reporting having had discussions at baseline, significantly greater proportions of participants reported having discussed tamoxifen, genetic counseling, and colonoscopy, as appropriate, after using CRIS. Most (79%) reported CRIS had "caused" their discussion. CRIS is an easily used, disseminable program that showed promising results in primary care settings.
Collapse
|
|
43
|
Braithwaite D, Sutton S, Mackay J, Stein J, Emery J. Development of a risk assessment tool for women with a family history of breast cancer. ACTA ACUST UNITED AC 2005; 29:433-9. [PMID: 16055276 DOI: 10.1016/j.cdp.2005.06.001] [Citation(s) in RCA: 26] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/10/2005] [Indexed: 11/22/2022]
Abstract
BACKGROUND Innovative technologies that enable the collection of family history information and the assessment of breast cancer risk have a potential to enhance the quality of preventive care. We developed a computerized tool that supports stratification of breast cancer risk, genetic risk assessment in the clinical environment (GRACE). METHODS In a preliminary evaluation of the tool's impact, we randomized women with a family history of breast cancer (n=72) to either use the GRACE tool or undergo risk counseling by a nurse specialist. RESULTS There was no statistically significant differences between the GRACE and nurse counselling groups in risk perceptions (F=.03, P>.05) and cancer-related worries (F=.80, P>.05). However, patients reported more positive attitudes toward working with the nurse. CONCLUSION It was feasible to use GRACE in a Clinic. Additional research is required to identify solutions for providing emotional support in conjunction with the tool.
Collapse
Affiliation(s)
- Dejana Braithwaite
- Carol Franck Buck Breast Care Center, UCSF Comprehensive Cancer Center, University of California, 2186 Geary Boulevard, Suite 103, San Francisco, CA 94115, USA.
| | | | | | | | | |
Collapse
|
|
44
|
Abstract
BACKGROUND Identification of individuals at high risk for colon and breast cancer requires an adequate family history assessment and can influence cancer screening and genetic testing decisions. Little data exist that evaluate the completeness of the family history interview in primary care. METHODS Retrospective chart review of 995 new patient visits to 28 primary care physicians evaluating the completeness of the family cancer history for colon or breast cancer. Family history information was evaluated for inclusion of age at diagnosis, degree of kinship, and specification of disease of interest. RESULTS Family history information on cancer diagnoses was collected on 679 (68%) of the patients. Specific information regarding the individual affected and the cancer diagnosis was present in 414 (61%) of the records. Affected first-degree relatives were more likely to have their age of cancer diagnosis recorded than second-degree relatives (39%, 95% confidence interval [CI]=34%-44% vs 16%, 95% CI=12%-20%). Age at diagnosis of cancer in first-degree relatives was documented in 51% of colon cancers, 38% of breast cancers, and 27% of ovarian cancers. Only 17% of individuals who meet criteria for early-onset breast cancer genetic testing were referred for genetic services. CONCLUSIONS Adequate cancer risk assessment using family history information requires age at cancer diagnosis and specification of a cancer diagnosis. Age at diagnosis was frequently missing from family history assessments, which could have a potential impact on identification of high-risk individuals. When family history information does identify high-risk individuals, only the minority are referred for genetic services.
Collapse
Affiliation(s)
- Harvey J Murff
- Division of General Internal Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA
| | | | | |
Collapse
|
|
45
|
Sweet KM, Willis SK, Ashida S, Westman JA. Use of fear-appeal techniques in the design of tailored cancer risk communication messages: implications for healthcare providers. J Clin Oncol 2003; 21:3375-6. [PMID: 12947078 DOI: 10.1200/jco.2003.99.049] [Citation(s) in RCA: 12] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022] Open
|
|
46
|
Abstract
Family history assessment can be used to combine population-wide health promotion and risk-reduction efforts with a high-risk, targeted approach to help reduce the burden of cardiovascular disease (CVD). Family history is an independent predictor of CVD, and the upper portion of the family history distribution explains a larger fraction of CVD in the population than can be explained by extreme values of other risk factors (e.g., blood pressure and cholesterol). A positive family history of disease captures the underlying complexities of gene-gene and gene-environment interactions by identifying families with combinations of risk factors, both measured and unmeasured, that lead to disease expression. Family history is a useful tool for identifying most prevalent cases of CVD and for population-wide disease-prevention efforts. A positive family history also identifies the relatively small subset of families in the population at highest risk for CVD who may benefit most from targeted screening and intensive intervention.
Collapse
Affiliation(s)
- Steven C Hunt
- Cardiovascular Genetics Research Program, Department of Internal Medicine, University of Utah School of Medicine, 410 Chipeta Way, Room 167, Salt Lake City, UT 84108, USA.
| | | | | |
Collapse
|
|
47
|
Sweet KM, Bradley TL, Westman JA. Identification and referral of families at high risk for cancer susceptibility. J Clin Oncol 2002; 20:528-37. [PMID: 11786583 DOI: 10.1200/jco.2002.20.2.528] [Citation(s) in RCA: 91] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/12/2023] Open
Abstract
PURPOSE Obtainment of family history and accurate assessment is essential for the identification of families at risk for hereditary cancer. Our study compared the extent to which the family cancer history in the physician medical record reflected that entered by patients directly into a touch-screen family history computer program. PATIENTS AND METHODS The study cohort consisted of 362 patients seen at a comprehensive cancer center ambulatory clinic over a 1-year period who voluntarily used the computer program and were a mixture of new and return patients. The computer entry was assessed by genetics staff and then compared with the medical record for corroboration of family history information and appropriate physician risk assessment. RESULTS Family history information from the medical record was available for comparison to the computer entry in 69%. It was most often completed on new patients only and not routinely updated. Of the 362 computer entries, 101 were assigned to a high-risk category. Evidence in the records confirmed 69 high-risk individuals. Documentation of physician risk assessment (ie, notation of significant family cancer history or hereditary risk) was found in only 14 of the high-risk charts. Only seven high-risk individuals (6.9%) had evidence of referral for genetic consultation. CONCLUSION This study demonstrates the need to collect family history information on all new and established patients in order to perform adequate cancer risk assessment. The lack of identification of patients at highest risk seems to be directly correlated with insufficient data collection, risk assessment, and documentation by medical staff.
Collapse
Affiliation(s)
- Kevin M Sweet
- Division of Human Genetics, Department of Internal Medicine, The Ohio State University, Columbus, OH, USA.
| | | | | |
Collapse
|
|
48
|
Green MJ, Biesecker BB, McInerney AM, Mauger D, Fost N. An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. AMERICAN JOURNAL OF MEDICAL GENETICS 2001; 103:16-23. [PMID: 11562929 DOI: 10.1002/ajmg.1500] [Citation(s) in RCA: 106] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 11/10/2022]
Abstract
As genetic testing for susceptibility to breast cancer becomes more widespread, alternative methods for educating individuals prior to testing will be needed. Our objective was to compare face-to-face education and counseling by a genetic counselor with education by an interactive computer program, assessing the effects of each on knowledge of breast cancer genetics and intent to undergo genetic testing. We used a randomized, controlled trial. Seventy-two self-referred women with a first-degree relative with breast cancer received outpatient education and counseling at the Clinical Center of the National Institutes of Health (NIH). Twenty-nine received individualized counseling from a genetic counselor (counseling group), 29 received education from an interactive computer program followed by individualized counseling (computer group), and 14 were controls. Both pre- and postintervention assessment of knowledge about breast cancer genetics and intent to undergo genetic testing were measured. The control group participants correctly answered 74% of the knowledge questions; the counselor group, 92%; and the computer group, 96% (P <.0001). Unadjusted mean knowledge scores were significantly higher in the computer group than the counselor group (P =.048), but they were equivalent when adjusted for demographic differences (P = 0.34). Intent to undergo genetic testing was influenced by the interventions: preintervention, a majority in all groups (69%) indicated that they were likely (definitely and most likely) to undergo testing; after either intervention coupled with counseling, only 44% indicated that they were likely to do so (P =.0002; odds ratio = 2.8, 95% CI = 1.7-4.9). We concluded that a computer program can successfully educate patients about breast cancer susceptibility, and, along with genetic counseling, can influence patients' intentions to undergo genetic testing.
Collapse
Affiliation(s)
- M J Green
- Department of Humanities, Penn State College of Medicine, Hershey, Pennsylvania 17033, USA.
| | | | | | | | | |
Collapse
|
|
49
|
Lin IK, Bray BE, Smith JA, Lange LL. The feasibility of remote-controlled assistance as a search tool for patient education. Proc AMIA Symp 2001:378-82. [PMID: 11825214 PMCID: PMC2243344] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/23/2023] Open
Abstract
Patients often desire more information about their conditions than they receive during a physician office visit. To address the patient's information needs, a touchscreen information kiosk was implemented. Results from the first prototype identified interface, security, and technical issues. Misspelling of search terms was identified as the most observable cause of search failure. An experimental remote control assistance feature was added in the second prototype. The feature allowed a medical librarian to provide real-time remote help during searches by taking control of the patient's computer. Remote assistance improved patient satisfaction, increased ease of use, and raised document retrieval rate (86.7% vs. 56.7%). Both patients and librarians found the application useful. Reasons included its convenience and flexibility, opportunity for direct patient contact, ability to teach through direct demonstration, and complementing the librarian's role as an information gateway. The project demonstrated the feasibility of applying remote control technology to patient education.
Collapse
Affiliation(s)
- I K Lin
- Department of Medical Informatics, University of Utah School of Medicine, Salt Lake City, USA
| | | | | | | |
Collapse
|