5084 - The BRIGHTLIGHT national survey of the impact of specialist teenage and young adult cancer care on caregivers’ information and support needs

Background

Teenage and young adult cancer services in England are centralised in 13 principal treatment centres (TYA PTC). We sought to evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if cancer care was provided in a TYA PTC.

Methods

Participants in the cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire. Questionnaires were completed six months after diagnosis. Comparisons were made according to where young people’s care was delivered: all, some or no care in a TYA PTC. Principal component analysis reduced the questionnaire to five dimensions, which were used as dependent variables in subsequent regression analysis.

Results

A total of 830 young people were part of the BRIGHTLIGHT Cohort, of which 514 (62%) caregivers returned a questionnaire. Four hundred and seventy-six responses out of 514 returned questionnaires (92%) could be linked to the location of young people’s care and were included in the analysis. The majority of caregivers were white (89.7%), middle aged (71.1%), married/cohabiting (78%) mothers (80.2%). The Adjusted analysis indicated that caregivers of young people who had all or some of their care in a TYA PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some care in a TYA PTC had greater satisfaction with information but less opportunity to be involved in decisions.

Conclusions

Caregivers of young people who had no TYA PTC, i.e. treated solely in adult or children’s cancer units have the most unmet information and support needs.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

UCLH.

Funding

National Institute for Health Research (NIHR).

Disclosure

All authors have declared no conflicts of interest.