Samuel Tundealao, Emily Heidt, Sherry Grumet, Marc D Schwartz, Beth N Peshkin, Jinghua An, Scott T Walters, Lindsay O'Boyle, Deborah Toppmeyer, Anita Y Kinney
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引用次数: 0
Abstract
This study describes the development and feasibility testing of a digital health guide (DHG) to streamline genetic education, reduce barriers, and promote informed genetic testing (GT) decisions among cancer survivors. This study reports on the DHG's development, usability testing, acceptability, feasibility, and preliminary efficacy in improving genetic counseling (GC) and GT access for cancer survivors. Guided by the Ottawa Decision Support Framework, the DHG prototype was developed following community engagement with cancer patients and at-risk relatives from diverse sociodemographically backgrounds. It was refined through user (content-focused) and usability (functionality-focused) testing. Pilot trial participants provided data through semi-structured interviews and usability assessments. Qualitative data were analyzed using the Framework Method. The preliminary impact of the DHG on GC and GT uptake, and informed decision-making, was assessed in a feasibility and accessibility trial. The Chatbot Usability Questionnaire score for the DHG was 70.3 (IQR = 12.5), indicating good acceptability. The DHG also facilitated GT uptake (73.3%) compared to enhanced usual care (EUC; 7.7%). Pretest GC was requested by 1 of 13 patients in the EUC arm, while no request (0 of 15 patients) was made in the DHG arm. Users' feedback led to clearer language, improved navigation, and stronger messaging regarding data security. DHG participants had lower decisional conflict (33.37 ± 21.09) and decision regret (17.5 ± 16.50) than those in the EUC arm (53.25 ± 22.66 and 37.08 ± 17.38, respectively). The digital intervention is feasible, acceptable, and a promising strategy for expanding GT access and promoting informed decision-making. Further testing in a definitive randomized controlled trial is warranted. Clinical trial registration. This study was preregistered at the NIH clinical trial registry ( https://clinicaltrials.gov/study/NCT06184867 ).
期刊介绍:
The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals.
Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues.
The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries.
The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.