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Evaluation of a website for parents of children with juvenile idiopathic arthritis

Assessment of a web-based tool for parents of children with Juvenile Idiopathic Arthritis (JIA) coupled with standard care versus standard care alone: A randomised controlled trial

Status
Active, not recruiting
Phases
Unknown
Study type
Interventional
Source
ISRCTN
Registry ID
ISRCTN13159730
Enrollment
200
Registered
2015-11-05
Start date
2016-01-01
Completion date
Unknown
Last updated
2024-04-08

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Topic: Children, Musculoskeletal disorders

Interventions

Participants are randomly allocated to one of two groups: Group 1: Participants are given access to a specifically designed website (WebParC) for parents of children with Juvenile Idiopathic Arthriti

Sponsors

City University London
Lead Sponsor

Eligibility

Sex/Gender
All

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

MeasureTime frame
Parental Stress is measured using the Paediatric Inventory for Parents (PIP) questionnaire at baseline, 4 and 12 months.

Secondary

MeasureTime 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

Contacts

Public ContactSarrah Peerbux

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 12, 2026