JASP-1 for Children Recently Diagnosed and Their Parents

NCT06284616 | Completed

• 1 other identifier: K2019-0392
• Study Type: interventional
• Target: 82
• Locations: 1 country
• Sites: 1

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.

Conditions

JIA; Support Program; Patient Satisfaction; Patient Outcome Assessment

Keywords

JIA; Support program; Patient Satisfaction; Patient outcome assessment

Outcome Measures

Primary Outcomes (1)

• Rate of Patient Reported Experienced Measures (PREM)

  A study specific PREM questionnaire with 16 items. 5 point likert scale

  12 months

Secondary Outcomes (3)

• Rate of Overall perceived health

  12 months

• Rate of Child Health Activity Questionnaire (CHAQ)

  12 months

• Number of active joints

  12 months

Study Arms (2)

JASP-1 group

EXPERIMENTAL

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

Behavioral: JASP-1

Control group

NO INTERVENTION

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

Interventions

JASP-1 BEHAVIORAL

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

JASP-1 group

Eligibility Criteria

• Age: 1 Year - 16 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17)

You may qualify if:

• Children 1-16 years old
• Diagnosed with JIA at their first visit to the PRC

You may not qualify if:

• Children that did not fulfil the criteria for JIA
• Children/parents who could not understand the Swedish language.

Sponsors & Collaborators

• Region Stockholm: lead

Study Sites (1)

Astrid Lindgren Children´s Hospital

Stockholm, Region Stockholm, 17176, Sweden

Location

Related Publications (1)

• 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.

  PMID: 39143588 DERIVED

MeSH Terms

Conditions

Patient Satisfaction

Condition Hierarchy (Ancestors)

Treatment Adherence and Compliance; Health Behavior; Behavior

Study Officials

• Eva Broström, Professor

  Supervisor

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NON RANDOMIZED
• Masking: NONE
• Masking Details: All patient receiving a JIA diagnose was offered to participate in JASP-1. The controls had received diagnose before the start of the study.
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER GOV
• Responsible Party: SPONSOR

Model Details: The study is a non-randomized intervention study with 2 groups receiving either a Support program (JASP-1) or standard care

Study Record Dates

• First Submitted: February 13, 2024
• First Posted: February 29, 2024
• Study Start: August 15, 2019
• Primary Completion: April 15, 2023
• Study Completion: December 31, 2023
• Last Updated: March 6, 2024

Record last verified: 2024-02

Data Sharing

• IPD Sharing: Will not share

Locations

SE (1)