Juvenile idiopathic arthritis Musculoskeletal Diseases Juvenile idiopathic arthritis
Conditions
Interventions
Participants will be randomly assigned to one of the three arms using random permuted blocks to ensure groups are balanced. Randomisation will be performed using a custom-written script, administered
Sponsors
Health Research Board
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Adolescent (mentee): 1. Aged 12-18 years 2. Diagnosed with and actively being treated for JIA (any subtype) 3. Parent and adolescent are both able to speak and read English. 4. Access to a computer/ smartphone and internet connection Mentor: 1. Aged 18-26 years 2. Diagnosis of JIA (any subtype) 3. Nominated by a member of their health care team as a good mentor 4. Self-reported adherence to current treatment plan (80-100% compliance) 5. Self-reported successful transition to an adult rheumatologist 6. Self-reported self-efficacy in their ability to manage their JIA related symptoms 7. Willingness to commit to training (20 hours) and mentoring participants (once paired with mentee 10 to 30 minute calls over a period of 15 weeks) 8. Access to a computer/ smartphone and internet connection Young person advisory panel: 1. Aged 12-18 years 2. Diagnosis of JIA (any subtype) 3. Nominated by a member of their health care team as a good mentor 4. Access to a computer and internet connection 5. Self-reported self-efficacy in their ability to manage their JIA related symptoms 6. Willingness to commit to training (20 hours) and mentoring participants (once paired with mentee 10 to 30 minute calls over a a period of 12 weeks)
Exclusion criteria
Exclusion criteria: Adolescent (mentee), peer mentor and young person advisory panel member: 1. Major cognitive impairments, 2. Co-morbid medical or psychiatric illnesses based on medical assessment which may impact on ability to understand and use web-based programmes Parents/caregivers will not be eligible to participate in the study alone (without an adolescent also participating)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Acceptability and satisfaction of the intervention, assessed by: 1.1. Adolescents with JIA and their parents in the TTC and iP2P-TTC intervention groups will rate acceptability of and satisfaction with the intervention immediately post-intervention using a questionnaire designed specifically for this intervention 1.2. Semi-structured interviews at study completion with 4-6 adolescent-parent dyads (chosen using a random number list), to assess satisfaction with TTC and the integrated iP2P-TTC programme 1.3. Semi-structured interviews with the adolescents post-intervention to broadly assess engagement (including the most helpful aspects, participant enjoyment and how the tailoring was done) 2. Quality of received mentorship (for participants allocated to the integrated iP2P-TTC group only), assessed using the Mentor Behaviour Scale (MBS) immediately following completion of the intervention 3. Perspectives of mentors explored the mentoring experience with the following methodology: 3.1. Individual semi-structured telephone interviews conducted before the mentors commence the mentoring programme (to gauge their expectations) 3.2. Ecological Momentary Assessment (EMA) methodology used throughout the mentoring programme. Mentors will be asked to complete a brief online open-ended questionnaire immediately after each Skype call with a mentee. 3.3. Individual ‘data-prompted’ interviews conducted face-to-face once the mentoring programme is complete. 4. Website programme usage (which TTC modules have been accessed and in what order) by adolescents with JIA and parents in the TTC alone group, tracked by Google Analytics throughout the study 5. Usage of the iP2P-TTC intervention for the iP2P-TTC group: 5.1. Order and amount of used TTC modules, tracked by Google Analytics throughout the study | — |
Secondary
| Measure | Time frame |
|---|---|
| The following will be assessed at the baseline, immediately post-intervention and at the 3 and 6 month follow-up for adolescent participants: 1. Self-management, assessed using TRANSITION-Q 2. Disease knowledge, assessed using the Medical Issues, Exercise, Pain and Social Support Questionnaire (MEPS) 3. Self-efficacy, assessed using the Children's Arthritis Self-Efficacy (CASE) questionnaire 4. Physical pain, assessed using the PROMIS Pediatric Profile Pain Intensity and Interference scales 5. Emotional symptoms (anxiety and depression), assessed using the PROMIS Pediatric Profile Anxiety and Depression scales 6. Perceived social support, assessed using the PROMIS Pediatric Profile Peer Relationship Scale 7. Health-related quality of life, assessed using the PedsQL Arthritis Module The following will be assessed at the baseline, immediately post-intervention and at the 3 and 6 month follow-up for parents regarding their adolescents: 1. Health-related quality of life, assessed using the PedsQL Arthritis Module 2. Adherence, assessed using the Patient Adherence Report Questionnaire (PARQ) 3. Medical issues, assessed using the Medical Issues Questionnaire 4. Self-efficacy, assessed using the Parent Arthritis Self-Efficacy (PASE) Scale The following will be assessed at the baseline, immediately post-intervention and at the 3 and 6 month follow-up for the mentors: 1. Perceived ability to perform one's usual social roles and activities, assessed using the Ability to Participate in Social Roles and Activities - PROMIS Short Form 8a 2. Disease self-efficacy, assessed using the Chronic Disease Self-Efficacy Scale 3. PROMIS–29 Profile v2.0.19, a five-point scale assessing the following areas: 3.1. Physical | — |
Countries
Ireland
Contacts
Public ContactSiobhán O'Higgins
Outcome results
None listed