Top 10 research priorities for digital technology for adolescents and young persons with inflammatory bowel disease: Results of a James Lind Alliance Priority Setting Partnership.

OBJECTIVES: Priority Setting Partnerships (PSP's) using the James Lind Alliance (JLA) methodology, bring together health professionals, patients and parents/carers to identify and prioritise unanswered questions that can be addressed by future research projects. To identify and prioritise the top 10 unanswered research priorities in digital technology for adolescents and young people (AYP) with inflammatory bowel disease (IBD). METHODS: A steering group (SG) consisting of AYP with IBD, their parents/carers, representatives from two charities (Crohn's & Colitis UK, Crohn's in Childhood Research Association), patient information forum and paediatric and adult and primary care healthcare professionals was established in 2021. The SG agreed the protocol, and scope of the PSP and oversaw all aspects. SG meetings were chaired by a JLA advisor and followed the established JLA methodology. RESULTS: The initial survey generated 414 in-scope questions from 156 respondents, thematically categorised into 10 themes and consolidated into 92 summary questions by the SG. A comprehensive literature review followed by SG deliberation narrowed the unanswered summary questions to 45, for the interim prioritising survey. One hundred and two respondents ranked their top 10 research questions. Outputs generated top 18 research priorities presented at a final virtual prioritisation workshop, facilitated by JLA advisors and attended by key stakeholders, ranked into top 10 research priorities. DISCUSSION: The top 10 research priorities will encourage researchers to undertake research that addresses these areas of unmet need for AYP living with IBD, their parents/carers and their healthcare professionals, thereby facilitating improved patient care.

Children and young people's preferences and needs when using health technology to self-manage a long-term condition: a scoping review.

BACKGROUND: The use of patient-facing health technologies to manage long-term conditions (LTCs) is increasing; however, children and young people (CYP) may have preferences about health technologies which they interact or engage with, that influence their decision to use these technologies. AIMS: To identify CYP's reported preferences about health technologies to self-manage LTCs. METHODS: We undertook a scoping review, searching MEDLINE, PsycINFO and CINAHL in July 2021. Searches were limited to papers published between January 2015 and July 2021. We included any health technologies used to manage physical and mental LTCs. Qualitative content analysis of study data was undertaken to categorise data into themes and quantitative data were described and visually represented. We engaged CYP with LTCs to support the review design, interpretation of findings and development of recommendations. RESULTS: 161 journal articles were included, describing preferences of CYP. Most included studies were undertaken in high-income countries. CYP's main preferences and needs were: design and functionality; privacy and sharing; customisation and personalisation of the technology; and interaction options within the technology. CONCLUSIONS: This review highlights important preferences and needs that CYP may have before using technologies to self-manage their LTC. These should be considered when developing technology for this population. Future research should involve CYP throughout the development of the technologies, from identifying their unmet needs through to final design, development, evaluation and implementation of the intervention.