Development of a person-centred digital platform for the long-term support of people living with an adult-onset genetic disease predisposition: a mixed-methods study protocol.

Autor:	Best S; Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Victoria, Australia.; Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia., Al Mahmud A; Centre for Design Innovation, Department of Architectural and Industrial Design, Swinburne University of Technology, Hawthorn, Victoria, Australia., Tyagi S; Department of Communication Design, School of Design and Architecture, Swinburne University of Technology, Hawthorn, Victoria, Australia., Wheeler JCW; Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia., Forkan ARM; Department of Computing Technologies, Swinburne University of Technology, Hawthorn, Victoria, Australia., Lewis A; Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia., Shuakat N; Department of Computing Technologies, Swinburne University of Technology, Hawthorn, Victoria, Australia.; Department of Health Sciences and Biostatistics, School of Health Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia., Kaul R; Department of Computing Technologies, Swinburne University of Technology, Hawthorn, Victoria, Australia., Ward A; Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia., Wickramasinghe N; Department of Health Sciences and Biostatistics, School of Health Sciences, Swinburne University of Technology, Hawthorn, Victoria, Australia.; Iverson Health Innovation Research Institute, Swinburne University of Technology, Hawthorn, Victoria, Australia., Jayaraman PP; Department of Computing Technologies, Swinburne University of Technology, Hawthorn, Victoria, Australia., Trainer AH; Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Victoria, Australia Alison.Trainer@Petermac.org.; Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
Jazyk:	angličtina
Zdroj:	BMJ open [BMJ Open] 2023 Jul 30; Vol. 13 (7), pp. e071492. Date of Electronic Publication: 2023 Jul 30.
DOI:	10.1136/bmjopen-2022-071492
Abstrakt:	Introduction: Individuals at an inherited high-risk of developing adult-onset disease, such as breast cancer, are rare in the population. These individuals require lifelong clinical, psychological and reproductive assistance. After a positive germline test result, clinical genetic services provide support and care coordination. However, ongoing systematic clinical follow-up programmes are uncommon. Digital health solutions offer efficient and sustainable ways to deliver affordable and equitable care. This paper outlines the codesign and development of a digital health platform to facilitate long-term clinical and psychological care, and foster self-efficacy in individuals with a genetic disease predisposition. Methods and Analysis: We adopt a mixed-methods approach for data gathering and analysis. Data collection is in two phases. In phase 1, 300 individuals with a high-risk genetic predisposition to adult disease will undertake an online survey to assess their use of digital health applications (apps). In phase 2, we will conduct focus groups with 40 individuals with a genetic predisposition to cardiac or cancer syndromes, and 30 clinicians from diverse specialities involved in their care. These focus groups will inform the platform's content, functionality and user interface design, as well as identify the barriers and enablers to the adoption and retention of the platform by all endusers. The focus groups will be audiorecorded and transcribed, and thematic and content data analysis will be undertaken by adopting the Unified Theory of Acceptance and Use of Technology. Descriptive statistics will be calculated from the survey data. Phase 3 will identify the core skillsets for a novel digital health coordinator role. Outcomes from phases 1 and 2 will inform development of the digital platform, which will be user-tested and optimised in phase 4. Ethics and Dissemination: This study was approved by the Peter MacCallum Human Research Ethics Committee (HREC/88892/PMCC). Results will be disseminated in academic forums, peer-reviewed publications and used to optimise clinical care. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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