Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Delivering equitable cancer care for adolescents and young adults (AYA): comparison of patient-reported outcomes by place of care: BRIGHTLIGHT_2021 (126476)

Lorna A Fern 1 , Elysse Bautista González 2 , Cecilia Vindrola 2 , Rachel M Taylor 1 2 , BRIGHTLIGHT_2021 Study Group 1
  1. Cancer Clinical Trials Unit, University College London Hospitals, London, Greater London, United Kingdom
  2. Department of Targeted Intervention, University College London, London, Greater London, UK

Background

United Kingdom healthcare policy recognises adolescents and young adults (AYA:16-24 years at diagnosis) require specialist care. Principal Treatment Centres (AYA-PTCs) deliver enhanced care. Policy advocates ‘joint-care’ between AYA-PTCs and regional designated hospitals (DH)- introduced to enable age-appropriate care closer to home. BRIGHTLIGHT data (2012–2014) showed poorer psychosocial outcomes for AYA receiving joint-care, potentially reflecting immature AYA services (1,2). 

 

BRIGHTLIGHT_2021 examined patient-reported outcomes (PRO) and explore whether ‘culture of AYA care’ evolution to enable inter-organisational collaboration under joint-care models.

 

Methods

A national survey captured patient-reported outcomes (PROs) 6-months post-diagnosis.Primary Outcome: Quality of life (QoL;PedsQL 4.0™). Secondary outcomes included anxiety, depression (Hospital Anxiety and Depression Scale), health status (EQ-5D), social support (Multidimension Scale of Perceived Social Support) and illness perception(Brief Illness Perception Scale). Mixed effects models compared all-PTC, no-PTC and joint-care.

 

Simultaneously, rapid ethnography was conducted, involving semi-structured interviews with PTC/DH professionals, n=59. Total interview time:1567 mins (median 30min). Data were analysed against D’Amour’s structuration model through framework analysis.

 

260/1009 (25.8%) AYA responded. Statistical analysis included England only. Mean QoL scores were <69.7 the threshold indicating impaired QoL (mean 58.65 standard deviation 20.13). After adjustment for confounding factors, no clinically significant differences in mean QoL between categories existed. No notable differences in social support, anxiety, depression, or illness perception between categories existed.

 

Impact on practice

AYA psychosocial outcomes were consistent across care models. Variation existed across the different dimensions of inter-organisational collaboration. Coordinated care was mostly developing but full collaboration for a shared vision existed. Fragmented information sharing related to IT infrastructure/information governance continues to limit joint-care delivery. Outreach teams are essential for coordination but not nationally available and reliant on third-sector(NGO) funding.

 

Discussion

Sustaining equitable joint-care nationally requires inter-organisational collaboration which hinges on dedicated funding and structural support to maintain specialist psychosocial services within localised models of care.

  1. 1. Taylor RM, Fern LA, Barber J, Gibson F, Lea S, Patel N, et al. Specialist cancer services for teenagers and young adults in England: BRIGHTLIGHT research programme. Programme Grants for Applied Research. 2021 Nov;9(12):1–82. 2. Taylor RM, Fern LA, Barber J, Alvarez-Galvez J, Feltbower R, Morris S, et al. Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England. BMJ Open. 2019 Apr 20;9(4):e027797.