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Abstract
Introduction Juvenile idiopathic arthritis (JIA) negatively affects adolescents’ everyday activities. To address the need for innovative, effective, convenient, low-cost psychosocial self-management programmes, we developed an Irish version of Canadian Teens Taking Charge (TTC) and integrated it with Skype-based peer support iPeer2Peer (iP2P).
Objectives To explore the feasibility and preliminary outcome impact (effectiveness) of an integrated iP2P and Irish TTC, via three-arm (treatment as usual, TTC and iP2P–TTC) pilot randomised controlled trial (RCT); and determine feasibility and sample size for a full RCT. To ensure active involvement of adolescents with JIA via a Young Person Advisory Panel and examine how participants experienced the study. Finally, to see if TTC and iP2P with TTC reduce costs for families.
Methods and analysis Recruitment of 60 families will be ongoing until July 2019, via healthcare professionals and support groups. Analysis will consist of single-blinded (outcome assessment), three-arm pilot RCT, using online questionnaires, with assessments at baseline (T1), after intervention (T2) and 3 months post-intervention (T3). The primary outcomes on feasibility with comparisons of TTC and iP2P–TTC on fidelity, acceptability and satisfaction, engagement and degrees of tailoring. The secondary outcomes will be self-management and self-efficacy and a range of health-related quality-of-life factors, pain indicators and costs.
Participants from the intervention groups will be invited to share their perspectives on the process in semistructured interviews. Quantitative data will be analysed using SPSS V.21 and the audio-taped and transcribed qualitative data will be analysed using qualitative content analysis.
Dissemination Via journal articles, conference presentations, co-delivered by key stakeholders when possible, launch of accessible, effective and sustainable Internet self-management and peer support for Irish adolescents with JIA.
Trial registration number ISRCTN13535901; Pre-results.
- health informatics
- information technology
- paediatric rheumatology
- juvenile rheumatoid arthritis, adolescent stakeholder involvement, quality of life, self-care, online interventions
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Footnotes
Collaborators Team Pain, Centre for Pain Research, School of Psychology, NUI Galway: Laura O'Connor, Brian Slattery, Michelle Hanlon, Hannah Durand, Stephanie Haugh.
Contributors SO’H: Applied for the ethics in both university and hospital, recruited both YPAPA and Mentors, trained both YPAP and mentors, devised recruitment posters, parents invite letter, consent and assent forms. Liaised with HCPs and families. Devised the layout of the measures and the survey for all participants. Tested same and made amendments. Wrote the paper and the protocol. Revised it critically for important intellectual content. Approved final version. Agrees to be accountable for all aspects of the work. JS: designed and rolled out Canadian TTC and iPeer2Peer. Oversaw all adaptions to the text and videos. Liaised with all HCPs and families. Helped to draft the paper and the protocol and revised it critically for important intellectual content. Gave final approval of the version published. Agrees to be accountable for all aspects of the work. SAK: designed and rolled out Canadian iP2P and oversaw adaptions to the training and planning of the mentoring aspect of the study. Helped design the measures for the whole study to ensure questionnaire not too onerous for participants. Revised the paper critically for important intellectual content. Gave final approval of the version published. Agrees to be accountable for all aspects of the work. LC: involved with the design of the work, helped revise and then deliver the adapted training for the mentors. Supported the drafting of the paper and also revised it critically for important intellectual content. Gave final approval of the version published. Agrees to be accountable for all aspects of the work. CH: involved in the design of the pilot RCT and selection of appropriate measures. Revised the paper critically for important intellectual content. Gave final approval of the version published. Agrees to be accountable for all aspects of the work. BEM: designed the whole study, oversaw all engagement with participants and stakeholders, advised on selection of appropriate measures. Has final say on all aspects of the study as PI. Revised the paper critically for important intellectual content. Gave final approval of the version published. Agrees to be accountable for all aspects of the work.
Funding This work is supported by Irish Health Research Board (HRB) and National Children’s Hospital (NCHF), grant number—NCHF-2017-003.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Research Ethics Committees—National University of Ireland, Galway and Our Lady’s Children’s Hospital (OLCH), Crumlin, and Temple Street Children’s Hospital, Dublin.
Provenance and peer review Not commissioned; externally peer reviewed.