Academic Journal
Genetics Navigator: protocol for a mixed methods randomized controlled trial evaluating a digital platform to deliver genomic services in Canadian pediatric and adult populations
| العنوان: | Genetics Navigator: protocol for a mixed methods randomized controlled trial evaluating a digital platform to deliver genomic services in Canadian pediatric and adult populations |
|---|---|
| المؤلفون: | D'Amours, Guylaine, Clausen, Marc, Luca, Stephanie, Reble, Emma, Kodida, Rita, Assamad, Daniel, Bernier, Francois, Chad, Lauren, Costain, Gregory, Dhalla, Irfan, Faghfoury, Hanna, Friedman, Jan M, Hewson, Stacy, Jamieson, Trevor, Silver, Josh, Shuman, Cheryl, Osmond, Matthew, Carroll, June C, Jobling, Rebekah, Laberge, Anne-Marie, Aronson, Melyssa, Liston, Eriskay, Lerner-Ellis, Jordan, Marshall, Christian, Brudno, Michael, Pham, Quynh, Rudzicz, Frank, Cohn, Ronald, Mamdani, Muhammad, Smith, Maureen, Shastri-Estrada, Serena, Seto, Emily, Thorpe, Kevin, Ungar, Wendy, Hayeems, Robin Z, Bombard, Yvonne |
| المساهمون: | Institute of Health Services and Policy Research |
| المصدر: | BMJ Open ; volume 14, issue 9, page e090084 ; ISSN 2044-6055 2044-6055 |
| بيانات النشر: | BMJ |
| سنة النشر: | 2024 |
| الوصف: | Introduction Genetic testing is used across medical disciplines leading to unprecedented demand for genetic services. This has resulted in excessive waitlists and unsustainable pressure on the standard model of genetic healthcare. Alternative models are needed; e-health tools represent scalable and evidence-based solution. We aim to evaluate the effectiveness of the Genetics Navigator, an interactive patient-centred digital platform that supports the collection of medical and family history, provision of pregenetic and postgenetic counselling and return of genetic testing results across paediatric and adult settings. Methods and analysis We will evaluate the effectiveness of the Genetics Navigator combined with usual care by a genetics clinician (physician or counsellor) to usual care alone in a randomised controlled trial. One hundred and thirty participants (adults patients or parents of paediatric patients) eligible for genetic testing through standard of care will be recruited across Ontario genetics clinics. Participants randomised into the intervention arm will use the Genetics Navigator for pretest and post-test genetic counselling and results disclosure in conjunction with their clinician. Participants randomised into the control arm will receive usual care, that is, clinician-delivered pretest and post-test genetic counselling, and results disclosure. The primary outcome is participant distress 2 weeks after test results disclosure. Secondary outcomes include knowledge, decisional conflict, anxiety, empowerment, quality of life, satisfaction, acceptability, digital health literacy and health resource use. Quantitative data will be analysed using statistical hypothesis tests and regression models. A subset of participants will be interviewed to explore user experience; data will be analysed using interpretive description. A cost-effectiveness analysis will examine the incremental cost of the Navigator compared with usual care per unit reduction in distress or unit improvement in quality of life from ... |
| نوع الوثيقة: | article in journal/newspaper |
| اللغة: | English |
| DOI: | 10.1136/bmjopen-2024-090084 |
| الاتاحة: | http://dx.doi.org/10.1136/bmjopen-2024-090084 https://syndication.highwire.org/content/doi/10.1136/bmjopen-2024-090084 |
| Rights: | http://creativecommons.org/licenses/by-nc/4.0/ |
| رقم الانضمام: | edsbas.AB540854 |
| قاعدة البيانات: | BASE |
| DOI: | 10.1136/bmjopen-2024-090084 |
|---|