JASP-1 for Children Recently Diagnosed and Their Parents

Region Stockholm82 enrolled

Overview

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.

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.

Study Type

INTERVENTIONAL

Allocation

NON_RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

Conditions

JIA Support Program Patient Satisfaction Patient Outcome Assessment

Interventions

JASP-1BEHAVIORAL

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

Eligibility

Sex: ALLMin age: 1 YearMax age: 16 Years

Medical Language ↔ Plain English

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.

Locations (1)

Astrid Lindgren Children´s Hospital

Stockholm, Region Stockholm, Sweden

Outcomes

Primary Outcomes

Rate of Patient Reported Experienced Measures (PREM)

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

Time frame: 12 months

Secondary Outcomes

Rate of Overall perceived health

One item on a 5 point likert scale, range from "not good at all" to "totally good"

Time frame: 12 months

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

Time frame: 12 months

Number of active joints

Medical doctors assessment of the childs actice joints

Time frame: 12 months

Data from ClinicalTrials.gov

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