JASP-1 for Children Recently Diagnosed and Their Parents

Region Stockholm

Status: Completed

Conditions: Patient Satisfaction; Support Program; JIA; Patient Outcome Assessment

Treatments: Behavioral: JASP-1

Study type: Interventional

Funder types: Other

Identifiers

NCT06284616

K2019-0392

Details and patient eligibility

About

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.

Full 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.

Enrollment: 82 patients

Sex: All

Ages: 1 to 16 years old

Volunteers: No Healthy Volunteers

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.

Trial design

Primary purpose: Supportive Care

Allocation: Non-Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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82 participants in 2 patient groups

JASP-1 group

Experimental group

Description:

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

Treatment:

Behavioral: JASP-1

Control group

No Intervention group

Description:

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