JASP-1 for Children Recently Diagnosed and Their Parents

Patient Satisfaction Clinical Trial

— JASP-1  

Official title:

Benefits of a Juvenile Arthritis Support Program (JASP-1) for Children Recently Diagnosed With Juvenile Idiopathic Arthritis (JIA) and Their Parents

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT06284616
• Other study ID #: K2019-0392
• Status: Completed
• Phase: N/A
• Start date: August 15, 2019
• Est. completion date: December 31, 2023

Study information

• Verified date: February 2024
• Source: Region Stockholm
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 82
• Est. completion date: December 31, 2023
• Est. primary completion date: April 15, 2023
• Accepts healthy volunteers: No
• Gender: All
• Age group: 1 Year to 16 Years

Eligibility

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.

Related Conditions & MeSH terms

• JIA
• Patient Outcome Assessment
• Patient Satisfaction

Intervention

Behavioral:
• JASP-1
patients following the Juvenile Arthritis Support Program at the Pediatric Rheumatology Clinic

Locations

Country	Name	City	State
Sweden	Astrid Lindgren Children´s Hospital	Stockholm	Region Stockholm

Sponsors (1)

Lead Sponsor	Collaborator
Region Stockholm

Country where clinical trial is conducted

Sweden, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Rate of Patient Reported Experienced Measures (PREM)	A study specific PREM questionnaire with 16 items. 5 point likert scale	12 months
Secondary	Rate of Overall perceived health	One item on a 5 point likert scale, range from "not good at all" to "totally good"	12 months
Secondary	Rate of Child Health Activity Questionnaire (CHAQ)	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	12 months
Secondary	Number of active joints	Medical doctors assessment of the childs actice joints	12 months