JIA, Patient Outcome Assessment, Patient Satisfaction, Support Program
Conditions
Keywords
JIA, Support program, Patient Satisfaction, Patient outcome assessment
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.
Interventions
BEHAVIORALJASP-1
patients following the Juvenile Arthritis Support Program at the Pediatric Rheumatology Clinic
Sponsors
Region Stockholm
Study design
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.
Intervention model description
The study is a non-randomized intervention study with 2 groups receiving either a Support program (JASP-1) or standard care
Eligibility
Sex/Gender
ALL
Age
1 Years to 16 Years
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Rate of Patient Reported Experienced Measures (PREM) | 12 months | A study specific PREM questionnaire with 16 items. 5 point likert scale |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Rate of Overall perceived health | 12 months | One item on a 5 point likert scale, range from not good at all to totally good |
| Rate of Child Health Activity Questionnaire (CHAQ) | 12 months | CHAQ assesses functional ability and assists in understanding the impact of the disease on the child´s daily life. On a Visual Analog Scale (VAS) ranging 0 to 10 |
| Number of active joints | 12 months | Medical doctors assessment of the childs actice joints |
Countries
Sweden
Outcome results
None listed