Development of a PROM to evaluate patient experience of transitioning
Research type
Research Study
Full title
Development of a Patient Reported Outcome Measure (PROM) capable of evaluating Crohn's Disease patients' experiences of transitioning from paediatric to adolescent and into adult services.
IRAS ID
251408
Contact name
K Kemp
Contact email
Sponsor organisation
Central Manchester University Hospitals, NHS
Duration of Study in the UK
1 years, 1 months, 30 days
Research summary
The Crohn's Life Impact Questionnaire (CLIQ) was designed for use with patients aged 18 and over. It is proposed to adapt the CLIQ to make it suitable for valid assessment of patients aged 16 to 18 years. These patients will have been assessed for readiness to transition from the age of 11 years but will only be formally reviewed jointly by adult and paediatric clinicians from the age of 16 years onwards. The measure will then be suitable to evaluate the journey of young people with Crohn's Disease from paediatric to adult services.
The study will utilise qualitative interviews to ascertain the needs of the participants during transition. Cognitive debriefing interviews will be used the validate the questionnaire and postal surveys will be used to test the final questionnaire.REC name
East of Scotland Research Ethics Service REC 2
REC reference
19/ES/0099
Date of REC Opinion
25 Sep 2019
REC opinion
Further Information Favourable Opinion