Evaluation of specialist cancer services for teenagers and young adults in England: interpreting BRIGHTLIGHT study results through the lens of young people with cancer

被引：1

作者：

Rachel M. Taylor ^{[1
]}

Ben Connors ^{[2
]}

Alice Forster ^{[3
]}

Laura Haddad ^{[4
]}

Luke Hughes ^{[5
]}

Maria Lawal ^{[6
]}

Anika Petrella ^{[5
]}

Lorna A. Fern ^{[6
]}

机构：

[1] Centre for Nurse,Department of Targeted Intervention

[2] Midwife and Allied Health Profession Led Research (CNMAR),undefined

[3] University College London Hospitals NHS Foundation Trust,undefined

[4] University College London,undefined

[5] Independent Artist,undefined

[6] Future Health,undefined

[7] Patient Representative and Co-Researcher,undefined

[8] Cancer Clinical Trials Unit (CCTU),undefined

[9] University College London Hospitals NHS Foundation Trust,undefined

来源：

Research Involvement and Engagement | / 11卷 / 1期

关键词：

BRIGHTLIGHT; Teenagers; Adolescents; Young adults; Cancer; Culture; Perceptions; Quality of life; Patient interpretation;

D O I：

10.1186/s40900-025-00739-7

中图分类号：

学科分类号：

摘要：

BRIGHTLIGHT was the first national study to evaluate cancer services for teenagers and young adults (TYA) aged 13 to 24 in England. It involved six interconnected studies designed with input from young people, who also helped address problems and share findings. Despite comprehensive research, some confusing results emerged that healthcare professionals couldn't fully explain. To better understand these findings, researchers sought the perspective of young people who had experienced cancer. Seven members of the BRIGHTLIGHT Young Advisory Panel (YAP) joined a one-day workshop, with two acting as co-researchers. They reviewed key study results presented through live illustrations to help with interpretation. In the discussion that followed, the YAP offered unique insights not identified by researchers. They noted that the three-year follow-up period was too short to capture the full impact of cancer. They also pointed out that specialist care was defined by the number of hospital visits rather than the length of hospital stays, which might not reflect actual care quality. Additionally, they suggested that higher healthcare costs for those treated at multiple hospitals could be due to repeated tests and scans. The YAP emphasized that the diagnostic experience was significant and carried financial and emotional costs for young people and their families, which the results did not fully capture. Overall, the YAP's insights provided a deeper understanding of the findings, highlighting the importance of patient experience in interpreting complex healthcare studies. Their contributions helped shape the final conclusions of the BRIGHTLIGHT programme.

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