JASP-1 for Children Recently Diagnosed and Their Parents

NCT ID: NCT06284616

Last Updated: 2024-03-06

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 82 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2019-08-15
• Study Completion Date: 2023-12-31

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.

Conditions

JIA; Support Program; Patient Satisfaction; Patient Outcome Assessment

Study Design

• Allocation Method: NON_RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

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

Group Type: EXPERIMENTAL

JASP-1

Intervention Type: BEHAVIORAL

patients following the Juvenile Arthritis Support Program at the Pediatric Rheumatology Clinic

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

Group Type: NO_INTERVENTION

No interventions assigned to this group

Interventions

JASP-1

patients following the Juvenile Arthritis Support Program at the Pediatric Rheumatology Clinic

Intervention Type: BEHAVIORAL

Eligibility Criteria

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.

• Minimum Eligible Age: 1 Year
• Maximum Eligible Age: 16 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Region Stockholm

OTHER_GOV

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Eva Broström, Professor

Role: PRINCIPAL_INVESTIGATOR

Supervisor

Locations

Astrid Lindgren Children´s Hospital

Stockholm, Region Stockholm, Sweden

Countries

Sweden

References

Mordrup K, Jungner JG, Brostrom E, Palmblad K, Bartholdson C. Benefits of a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with Juvenile Idiopathic Arthritis and their parents. BMC Rheumatol. 2024 Aug 15;8(1):35. doi: 10.1186/s41927-024-00404-8.

Reference Type: DERIVED

PMID: 39143588 (View on PubMed)

Other Identifiers

K2019-0392

Identifier Type: -

Identifier Source: org_study_id