The development and validation of a needs assessment tool for use with young adult survivors of a central nervous system tumour (YOU-CAN)

Abstract

Adolescent and young adult (AYA) survivors of a central nervous system (CNS) tumour represent a vulnerable group who can experience: social isolation, low rates of employment and achieving independence can be compromised, leading to poorer quality of life compared with survivors of other cancer types. The aim of this study is to develop and evaluate the validity of a needs assessment tool (NAT) for AYA survivors of a CNS tumour. Items generated using data from 29 qualitative studies and cognitive interviews (n=8) produced NAT V1.1 (49-items). 128 of 316 eligible participants attending neuro-oncology clinics at four NHS sites between June 2022-March 2023 completed the NAT V1.1 to allow for item reduction and refinement and to evaluate reliability and validity. Pilot study (n=6) using YOU-CAN in routine follow-up concluded the study. Hierarchical analysis and Rasch analysis identified 18- and 15-items for removal, respectively. YOU-CAN, comprised of the remaining 16-items, demonstrates excellent test-retest reliability (intra-class correlation coefficient, 0.901, n=40) and sufficient correlation with European Quality of Life questionnaire and Supportive Care Needs Survey (Pearson r=0.433 and 0.590 respectively). Pilot-testing showed YOU-CAN triggered discussions of unmet needs in consultations and highlighted the importance of multi-disciplinary support. YOU-CAN is a valid and reliable instrument containing items related to concerns about physical and emotional health; family and relationships; self-acceptance; independence. Future efforts should examine YOU-CAN’s feasibility, and develop guidance for managing unmet needs. Routine use of YOU-CAN may improve identification of otherwise undiscussed unmet needs and opportunities to deliver personalised support.