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Completed

NCT Number: NCT04216498

Psychosocial Outcomes and Transition Readiness in JIA

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.

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Key information

Age range

10 year–25 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Sheffield Children's NHS Foundation Trust

Sheffield, United Kingdom

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Generalised Anxiety

    Time frame: 1 day

    Generalised Anxiety Disorder-7 Questionnaire (Spitzer et al., 2006)

Secondary outcomes

  1. Depression

    Time frame: 1 day

    Patient Health Questionnaire-9 Questionnaire (Spitzer et al., 1999)

  2. Health-related quality of life

    Time frame: 1 day

    Paediatric Quality of Life Arthritis Module (Varni et al., 2002)

  3. Social support

    Time frame: 1 day

    Bath Adolescent Pain Questionnaire Social Support Subscale (Eccleston et al., 2005)

  4. Family functioning

    Time frame: 1 day

    Bath Adolescent Pain Questionnaire Family Functioning Subscale (Eccleston et al., 2005)

  5. Prosocial and problem behaviours

    Time frame: 1 day

    Strengths and Difficulties Questionnaire (Goodman, 1997)

  6. 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

Sponsors and collaborators

Lead sponsor

Sheffield Children's NHS Foundation Trust

Other

Collaborators

  • Sheffield Teaching Hospitals NHS Foundation Trust

Registry information

Official study title

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

Important dates

Study start
2017
Primary completion
2018
Study completion
2018
First posted
Jan 2, 2020
Registry last updated
Jan 2, 2020

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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