Topic: Children, Musculoskeletal disorders
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: 1. Parents of children who have been newly diagnosed (within 6 months) with JIA according to internationally agreed criteria (Int. League against Rheumatism ILAR) 2. Aged 18 years or over 3. Ability to understand written and spoken English
Exclusion criteria
Exclusion criteria: 1. Identifiable psychosis or dementia in parents 2. Major problems with literacy making the completion of the questionnaires impossible 3. Too likely to be distressed by the study as judged by senior members of clinical staff
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Parental Stress is measured using the Paediatric Inventory for Parents (PIP) questionnaire at baseline, 4 and 12 months. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Parent effectiveness in managing their child's healthcare is assessed using the Effective Consumer Scale - Adapted (EC17-A) at baseline, 4 and 12 months 2. Parent self-efficacy in managing their child's arthritis is assessed using the Parent's Arthritis Self-Efficacy Scale (PASE) at baseline, 4 and 12 months 3. Parent coping is assessed using the Brief COPE at baseline, 4 and 12 months 4. Parent mood is assessed with the Hospital Anxiety and Depression Scale (HADS) at baseline, 4 and 12 months 5. Parent satisfaction with healthcare is assessed with the Client Evaluation of Service Questionnaire (CESQ) at baseline, 4 and 12 months 6. Child health-related quality of life is assessed with the parent administered version of the Child Health Questionnaire - PF50 (CHQ-PF50) at baseline, 4 and 12 months 7. Healthcare utilization is assessed by recording all contacts at the trial sites and with the Client Service Receipt Inventory (CSRI) questionnaire at baseline, 4 and 12 months 8. Dose-response relationship between the level of website usage and the primary and secondary outcomes, is determined by analysing website-based usage data at 12 months 9. Website usage is measured for the intervention group only at 4 and 12 months Added 15/11/2016: Process evaluation: 1. Illness beliefs in parents will be measured using the Brief Illness Perceptions Questionnaire (BIPQ) at baseline, 4 and 12 months 2. Acceptability will measured within a qualitative interview study using an topic guide based on an acceptability framework, on a small sample of parents from the intervention group (around 16 parents), randomly selected and invited to take part at 4 months 3. Website satisfaction and usage data will be assessed as part of the process evaluation by a satisfaction feedback questionnaire, administered to the intervention group at 4 and 12 months post randomisation 4. Context will be assessed by undertaking a survey assessing standard care across recruiting sites, and a survey of C | — |
Countries
England, United Kingdom