Benefits of a Juvenile Arthritis Support Program (JASP-1) for Children Recently Diagnosed With Juvenile Idiopathic Arthritis (JIA) and Their Parents
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Sponsor
- Region Stockholm
- Enrollment
- 82
- Locations
- 2
- Primary Endpoint
- Rate of Patient Reported Experienced Measures (PREM)
Study Overview
Brief Summary
To implement and evaluate a patient-and family-centered Juvenile Arthritis Support Program during one year (JASP-1) for children recently diagnosed with JIA and their parents and after 12 months compare satistaction with care and health outcomes with a control group receiving standard care.
Detailed Description
Children diagnosed with JIA (n=50) and their parents were offered the opportunity to participate in the JASP-1 from the time of diagnosis and the following year. One year after the JIA diagnosis, the children and/or their parents were invited to answer a study-specific questionnaire comprising 16 questions. The questionnaire assessed their experiences with the information, communication, participation, and emotional support they had received during the first year with JIA. In order to compare outcomes, the questionnaire was answered by both participants in JASP-1 and patients and parents receiving standard care (n=25).
One example of a question is; If you asked questions to the health care professionals, did you get answers that you understood? Response alternatives range from "No, not at all" to "Yes, Completely" ona 5-point Likert scale.
In Swedish Pediatric Rheumatology Quality Register (PedSRQ) information about treatment, disease- and joint activity (registered by Medical doctor), and Patient Reported Outcome Measures (PROM), are measured. The total Child Health Activity Questionnaire (CHAQ-score), as well as active joints and treatment at 12 months was registered in the PedSRQ and analyzed.
The study specific questionnaire measuring patient satisfaction has been developed in collaboration with the Swedish Municipalities and County councils.
Experimental and descriptive analyses will be performed using software for statistical analysis, SPSS. Distributions of responses will be calculated in percentage. Differences in proportions between groups will be determined by performing chi-square tests.
Study Design
- Study Type
- Interventional
- Allocation
- Non Randomized
- Intervention Model
- Parallel
- Primary Purpose
- Supportive Care
- Masking
- None
Masking Description
All patient receiving a JIA diagnose was offered to participate in JASP-1. The controls had received diagnose before the start of the study.
Eligibility Criteria
- Ages
- 1 Year to 16 Years (Child)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Children 1-16 years old
- •Diagnosed with JIA at their first visit to the PRC
Exclusion Criteria
- •Children that did not fulfil the criteria for JIA
- •Children/parents who could not understand the Swedish language.
Arms & Interventions
JASP-1 group
Participants were recruited from August 2019 to April 2022. The JASP-1 group consisted of children 0-16 years old who were diagnosed with JIA at their first visit to the PRC and their parents
Intervention: JASP-1 (Behavioral)
Control group
The control group consisted of children 1-16 years old, who were diagnosed with JIA at their first visit at the PRC who were receiving standard care after the diagnosis, and their parents
Outcomes
Primary Outcomes
Rate of Patient Reported Experienced Measures (PREM)
Time Frame: 12 months
A study specific PREM questionnaire with 16 items. 5 point likert scale
Secondary Outcomes
- Rate of Overall perceived health(12 months)
- Number of active joints(12 months)
- Rate of Child Health Activity Questionnaire (CHAQ)(12 months)