Psychosocial Outcomes and Transition Readiness in JIA

December 31, 2019 updated by: Sheffield Children's NHS Foundation Trust

Describing Relationships Between Psychosocial Outcomes and Readiness for Transition in Adolescent and Young Adult Patients With Juvenile Idiopathic Arthritis - a Pilot Study

It is widely acknowledged that the transition from paediatric to adult health services should be a multidimensional and multidisciplinary process that addresses the medical, psychosocial, and educational needs of adolescents and young adults (AYA). Despite this, there is currently a scarcity of research examining the relationships between psychosocial factors (e.g., anxiety, social support) and transition readiness in AYA with juvenile idiopathic arthritis (JIA). This study therefore aimed to examine the relationships between psychosocial factors and transition readiness in pre-transfer adolescents and post-transfer young adults aged 10-25 years diagnosed with JIA at a single centre.

In total, 40 adolescents aged 10-16 years together with a parent/guardian, will take part at Sheffield Children's Hospital and 40 young adults aged 16-25 years will take part at Sheffield Teaching Hospitals. Participants will be asked to complete a battery of self-report questionnaire measuring psychosocial factors (anxiety/depression, social support, family functioning, health-related quality of life) and transition readiness (transition knowledge and skills, self-efficacy). JIA disease severity was also measured during clinic appointments. This study has received full ethical approval, and all participants will give their written informed assent or consent before taking part.

The results from this research will be important in better understanding which psychosocial factors affect how ready young people with JIA feel to move from paediatric to adult rheumatology services. We hope this research will inform further work to help target psychological interventions in this group of patients.

Study Overview

Status

Completed

Study Type

Observational

Enrollment (Actual)

120

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

      • Sheffield, United Kingdom
        • Sheffield Children's NHS Foundation Trust

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

10 years to 25 years (Child, Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

The study population will be patients aged 10-25 years or parents/guardians of patients aged 10-16 years who have a diagnosis of juvenile idiopathic arthritis.

Description

Patient Inclusion Criteria:

  • Aged 10-25 years
  • Diagnosis of juvenile idiopathic arthritis (including all ILAR subtypes except 'systemic arthritis' and 'undifferentiated arthritis')
  • Juvenile idiopathic arthritis managed by Sheffield Children's Hospital or Sheffield Teaching Hospitals
  • Fluent in verbal and written English

Patient Exclusion Criteria:

  • Aged <10 years or >25 years
  • Diagnosis of juvenile idiopathic arthritis ILAR subtypes 'systemic arthritis' or 'undifferentiated arthritis')
  • Diagnosis of uveitis
  • Non-fluent in verbal and written English

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Parents/Guardians of Pre-Transfer Patients
Pre-Transfer Patients aged 10-16 years
Post-Transfer Patients aged 16-25 years

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Generalised Anxiety
Time Frame: 1 day
Generalised Anxiety Disorder-7 Questionnaire (Spitzer et al., 2006)
1 day

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Depression
Time Frame: 1 day
Patient Health Questionnaire-9 Questionnaire (Spitzer et al., 1999)
1 day
Health-related quality of life
Time Frame: 1 day
Paediatric Quality of Life Arthritis Module (Varni et al., 2002)
1 day
Social support
Time Frame: 1 day
Bath Adolescent Pain Questionnaire Social Support Subscale (Eccleston et al., 2005)
1 day
Family functioning
Time Frame: 1 day
Bath Adolescent Pain Questionnaire Family Functioning Subscale (Eccleston et al., 2005)
1 day
Prosocial and problem behaviours
Time Frame: 1 day
Strengths and Difficulties Questionnaire (Goodman, 1997)
1 day
JIA disease severity (JADAS-3)
Time Frame: 1 day
JADAS-3 is a composite score of patient VAS score, physician VAS score, active joint count
1 day

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

May 24, 2017

Primary Completion (Actual)

April 18, 2018

Study Completion (Actual)

April 18, 2018

Study Registration Dates

First Submitted

May 21, 2018

First Submitted That Met QC Criteria

December 31, 2019

First Posted (Actual)

January 2, 2020

Study Record Updates

Last Update Posted (Actual)

January 2, 2020

Last Update Submitted That Met QC Criteria

December 31, 2019

Last Verified

December 1, 2019

More Information

Terms related to this study

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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