YOU-CAN
Research type
Research Study
Full title
The feasibility of using a needs assessment tool developed with adolescent and YOUng adult survivor’s of a CentrAl Nervous system tumour (YOU-CAN) in a late effects service
IRAS ID
342446
Contact name
Kate/ K Law
Contact email
Sponsor organisation
The Christie NHS Foundation Trust
Duration of Study in the UK
0 years, 10 months, 10 days
Research summary
The provision of person-centred care is recommended by national guidance to improve the lives of survivors of cancer (NHS England, 2019). Adolescent and young adult survivors of central nervous system (CNS) tumours experience lower rates of quality of life compared to survivors of other cancer types due to a wide range of ongoing issues (Hobbie et al, 2016; Ljungman et al, 2022). YOU-CAN (16-items) is a newly developed needs assessment tool designed specifically for use with AYA survivors of a CNS tumour aged 16-39 years (Law et al, 2024).
This proposal presents a three phase mixed methods study to pilot and evaluate the feasibility of using YOU-CAN in an NHS late effects service and to examine the correlation between patient and proxy (i.e. parents/carers and partners) reports of unmet needs using YOU-CAN.
Phase 1: Patients will be invited to complete YOU-CAN and the European Quality of life questionnaire (EQ-5D) prior to their follow-up appointment, via text message from the hospital with a link to complete these questionnaires electronically. Results will embed directly into their electronic records and will form part of the consultation.
Phase 2: Following the consultation, up to 100 patient participants will be asked to complete a Patient-reported experience measure and be invited to take part in a semi-structured interview to explore the role of YOU-CAN in clinical care in more detail. Clinicians will also be invited to take part in semi-structured to understand the impact of using YOU-CAN on clinical care and decision making.
Phase 3: This phase will run concurrently with phase 2 and involves asking approximately 50 parents/carers/partners to complete YOU-CAN to examine the agreement between patient and parent/carer. In addition to YOU-CAN, a further free text question and interviews will be conducted to understand unmet needs from proxy perspectives.REC name
London - Brent Research Ethics Committee
REC reference
25/PR/0113
Date of REC Opinion
18 Feb 2025
REC opinion
Favourable Opinion