Mixed-Methods Evaluation of the Delivery of Cancer Care to Teenagers and Young Adults in England and Wales: BRIGHTLIGHT_2021.
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BACKGROUND: Healthcare policy in the United Kingdom recognizes that teenagers and young adults (TYAs: 16-24 years at diagnosis) require specialist care. In England, Principal Treatment Centers (PTCs) exist, delivering enhanced care exclusively within the PTC or as 'joint care' with designated hospitals (DHs). Central to this is the TYA multidisciplinary team (MDT) and an outreach model coordinating care between hospitals. We previously reported similar outcomes regardless of care location. AIMS: To compare TYA experiences of care with healthcare professionals' perspectives of the service they deliver. METHODS: Mixed methods across England and Wales were used. The TYA-MDT identified TYAs who then received a postal invite to a cross-sectional survey capturing experiences of places of care, treatment, healthcare professional support (HCP), mental health, sexuality/fertility, clinical trials and care coordination. Comparisons were made based on exposure to care in a specialist TYA environment within 6 months of diagnosis: all-TYA-PTC (all care in the TYA-PTC, n = 70, 28%), no-TYA-PTC (no care in the TYA-PTC (n = 87, 35%): care delivered in a children/adult unit only), and joint care (care in a TYA-PTC and in a children's/adult unit, n = 91, 36%). HCP perspectives were captured by rapid ethnography. RESULTS: A total of 250/1056 (24%) TYAs participated. Overall, 200 (80%) rated their teams as excellent/good for helping them prepare for treatment. No evidence of significant differences existed between categories of care for proportions receiving support from key TYA-related professionals: TYA cancer nurse specialists (all-TYA-PTC n = 58, 91%; joint care n = 71, 88%; no-TYA-PTC n = 64, 82%) and social workers (all-TYA-PTC n = 30, 55%; joint care n = 36, 48%; no-TYA-PTC n = 28, 38%). A trend of diminishing support from youth support co-coordinators existed (all-TYA-PTC 63%; joint care 49%; no-TYA-PTC 40%, p = 0.069). This may explain why few differences in patient experiences existed across categories of care. Forty-nine HCPs participated. They were more critical in their interpretation of care, highlighting inequity in resources and challenges in some pathways and coordination. CONCLUSIONS: Similar access to age-appropriate support across care settings is likely to reflect recruitment methods. When TYAs are known to the MDT, age-appropriate care can be mobilized beyond TYA units, which could explain the equitable outcomes observed across different care locations in young people who responded to the survey. Nevertheless, gaps persist in communication and coordination, particularly within joint care models, and in the involvement of allied health professionals such as dieticians and physiotherapists, whose input is essential for rehabilitation and return to normal life. Strengthening these areas will require continued investment in workforce capacity and digital infrastructure to support genuinely coordinated, developmentally appropriate TYA cancer care.