NAATTC Runway Project: qualitative interviews and PROM
Research type
Research Study
Full title
A qualitative exploration of patient experience, issues and unmet needs within the NHS specialist CAR-T service with associated PROM validation
IRAS ID
300457
Contact name
Jennifer Vidrine
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Chimeric antigen receptor (CAR) T cell therapies are a promising new option in blood cancers. T cells are a part of the immune system, which are able to target and destroy other cells. In CAR-T cell therapy, a sample of a patient’s T cells are collected and altered in a laboratory to target the patient’s own cancer cells. The patient undergoes a course of chemotherapy to deplete their existing immune system, and the altered “CAR-T” cells are then infused into the patient.
The CAR-T treatment model is complex. Due to the limited number of centres offering this therapy, it often involves caring for patients from outside the region, who may travel hundreds of miles to access the service. It requires multiple visits to the treating centre in the lead up to infusion and then a prolonged inpatient stay of at least 14 days. The treatment has a unique profile of toxicities and ITU (intensive care) admission is required in 30% of patients.
There is an urgent need to undertake an in-depth assessment of patient experiences of CAR-T, to inform evidence-based best practice for future service delivery. This qualitative research study involves semi-structured interviews with patients and carers receiving CAR-T treatment in Newcastle, Glasgow, Edinburgh and Leeds. Perspectives will be sought on experiences and impact of treatment, and any unmet needs. A CAR-T specific patient reported outcomes measure (PROM) pack will also be developed and validated directly with CAR-T patients and their families during interview, filling an important gap in PROM assessment for this patient population.
Analysis will allow comparison of models of care, referral and treatment pathways, treating each centre as its own case study. The aspects of each service that are critical for better outcomes will be drawn out, providing important data for CAR-T services nationally and internationally.
REC name
London - Surrey Research Ethics Committee
REC reference
21/LO/0643
Date of REC Opinion
4 Oct 2021
REC opinion
Further Information Favourable Opinion