Economic Evaluation of the Kentown Support Service
Research type
Research Study
Full title
Economic Evaluation of the Kentown Support Service for children with life-limiting conditions in Greater Manchester
IRAS ID
364527
Contact name
Lorna k. Fraser
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
2 years, 8 months, 30 days
Research summary
This study follows families who have received care from a new community palliative care service in Greater Manchester. The families will complete questionnaires over time and data will also be linked to routinely collected healthcare data.
Healthcare and household economics of families with a child with life-limiting conditions are complex. If we can’t run a trial, we use the best possible way to study real-life experiences. Some important information, which includes formal healthcare use like hospital admissions is routinely recorded. Others, such as financial and time costs parents bear over and above the formal system, are not. Combining parent report survey data to measure outcomes we know are important to families (e.g. unpaid care, transport costs), with routinely collected data will minimize the study burden on participants and facilitate a comparison of those receiving support and those who are not.
We will collect survey data from children and families who receive Kentown Support Services in Greater Manchester and consent to participate (n~250). Children and family-completed questionnaires on the costs to the family and quality of life outcomes will be collected at baseline, month 6 and month 12.
Routinely collected healthcare data consent will be obtained as part of the children and family survey to link to routinely collected healthcare for children who have received Kentown Support to enable an analyses of their emergency healthcare use. Pseudonymised data for other children with a life-limiting condition in Greater Manchester who haven’t received Kentown support will also be obtained. These children will be matched 1:3 with the cases for a total sample size of ~1000. The North West Secure Data Environment will support this study and hold full population data. To reduce data access insecurity, a backup plan of accessing these data through NHS England or the new Health Data Research Access Service is available.
REC name
Wales REC 3
REC reference
26/WA/0005
Date of REC Opinion
15 Jan 2026
REC opinion
Favourable Opinion