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Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England
  1. Rachel M Taylor1,
  2. Lorna A Fern2,
  3. Julie Barber3,
  4. Javier Alvarez-Galvez4,
  5. Richard Feltbower5,
  6. Stephen Morris6,
  7. Louise Hooker7,
  8. Martin G McCabe8,
  9. Faith Gibson9,10,
  10. Rosalind Raine11,
  11. Dan P Stark12,
  12. Jeremy S Whelan2
  1. 1 Cancer Clinical Trials, University College Hospitals NHS Foundation Trust, London, UK
  2. 2 Department of Oncology, University College London Hospitals NHS Foundation Trust, London, UK
  3. 3 Department of Statistical Science, University College London, London, UK
  4. 4 Department of Biomedicine, Biotechnology and Public Health, University of Cadiz, Cádiz, Spain
  5. 5 School of Medicine, University of Leeds, Leeds, UK
  6. 6 Department of Applied Health Research, University College London, London, UK
  7. 7 Wessex Teenage and Young Adult Cancer Service, University Hospital Southhamptom, Southampton, UK
  8. 8 Division of Cancer Sciences, University of Manchester, Manchester, UK
  9. 9 ORCHID, Great Ormond Street Hospital For Children NHS Trust, London, UK
  10. 10 School of Health Sciences, University of Surrey, Guildford, UK
  11. 11 Institute of Epidemiology & Health, University College London, London, UK
  12. 12 Leeds Insitute of Molecular Medicine, University of Leeds, Leeds, UK
  1. Correspondence to Dr Lorna A Fern; lorna.fern{at}nhs.net

Abstract

Objective International recognition of the unique needs of young people with cancer is growing. Many countries have developed specialist age-appropriate cancer services believing them to be of value. In England, 13 specialist principal treatment centres (PTCs) deliver cancer care to young people. Despite this expansion of specialist care, systematic investigation of associated outcomes and costs has, to date, been lacking. The aim of this paper is to describe recruitment and baseline characteristics of the BRIGHTLIGHT cohort and the development of the bespoke measures of levels of care and disease severity, which will inform the evaluation of cancer services in England.

Design Prospective, longitudinal, observational study.

Setting Ninety-seven National Health Service hospitals in England.

Participants A total of 1114 participants were recruited and diagnosed between July 2012 and December 2014: 55% (n=618) were men, mean age was 20.1 years (SD=3.3), most (86%) were white and most common diagnoses were lymphoma (31%), germ cell tumour (19%) and leukaemia (13%).

Results At diagnosis, median quality of life score was significantly lower than a published control threshold (69.7 points); 40% had borderline to severe anxiety, and 21% had borderline to severe depression. There was minimal variation in other patient-reported outcomes according to age, diagnosis or severity of illness. Survival was lower in the cohort than for young people diagnosed during the same period who were not recruited (cumulative survival probability 4 years after diagnosis: 88% vs 92%).

Conclusions Data collection was completed in March 2018. Longitudinal comparisons will determine outcomes and costs associated with access/exposure to PTCs. Findings will inform international intervention and policy initiatives to improve outcomes for young people with cancer.

  • brightlight
  • recruitment
  • teenagers and young adults
  • cancer
  • observational research
  • cohort

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Footnotes

  • Contributors RMT, LAF, JB, DPS, SM, RF, LH, MGM, FG, RR and JSW were involved in developing the protocol. RMT coordinated the running of the study and was responsible for data acquisition. JB, JA-G, RMT, LAF, SM, RF, DPS and JSW contributed to the analysis. RMT, LAF, JB and JSW drafted the manuscript. All authors critically revised and approved the final manuscript.

  • Funding This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209-10013). The BRIGHTLIGHT Team acknowledges the support of the NIHR, through the Cancer Research Network and support from University College London Hospitals Biomedical Research Centre. LF and LH are funded by Teenage Cancer Trust, and RR was (in part) supported by the NIHR Collaboration for Leadership in Applied Health Research and Care North Thames at Bart’s Health NHS Trust. None of the funding bodies have been involved with study concept, design or decision to submit the manuscript.

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, the Department of Health or Social Care or Teenage Cancer Trust.

  • Competing interests None declared.

  • Ethics approval The study was approved by London Bloomsbury NHS Research Ethics Committee (reference LO/11/1718). Approval by the Secretary of State under Regulation 5 of the Health Services (Control of Patient Information) Regulation 2002 was obtained from the Health Research Authority Confidentiality Advisory Group (reference ECC 8-05(d)/2011) to access the CWT dataset, Hospital Episode Statistic data and data from the National Cancer Registration and Analysis Service.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Further details of the BRIGHTLIGHT programme of work is available through the study website (www.brightlightstudy.com). Data that are not held under licence with Public Health England or NHS Digital will be available from late 2018 when the primary analysis is complete. We welcome collaboration; for general data sharing enquiries, please contact RMT (rtaylor13@nhs.net).

  • Patient consent for publication Not required.

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