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Review
. 2024 Mar;78(3):670-676.
doi: 10.1002/jpn3.12105. Epub 2024 Jan 4.

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

Priya Narula  1 , Marco Gasparetto  2 , Charlotte Wong  3   4 , Jacob Branchflower  5 , Shaji Sebastian  6 , John McLaughlin  7 , Arati Rao  8 , Ruth Wakeman  9 , Rachel Ainley  9 , Philip J Smith  10 , Jochen Kammermeier  11 , Lisa Younge  3 , Sophie Randall  12 , Seema Bukhari  13 , Jess Manson  13 , Patricia Ellis  14 , Naila Arebi  3   4 ; James Lind Alliance Priority Setting Partnership for Digital Technology for Adolescents and YP with Inflammatory Bowel Disease
Affiliations
Review

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

Priya Narula et al. J Pediatr Gastroenterol Nutr. 2024 Mar.

Abstract

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.

Keywords: IBD; adolescence; technology.

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References

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