Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study

Objectives In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or chil...

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Main Authors: Stephen Morris, Rosalind Raine, Faith Gibson, Rachel M Taylor, Jeremy Whelan, Richard Feltbower, Lorna A Fern, Julie Barber, Javier Alvarez-Galvez, Louise Hooker, Dan P Stark, Ana Martins, Sarah Lea
Format: Article
Language:English
Published: BMJ Publishing Group 2020-11-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/10/11/e038471.full
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author Stephen Morris
Rosalind Raine
Faith Gibson
Rachel M Taylor
Jeremy Whelan
Richard Feltbower
Lorna A Fern
Julie Barber
Javier Alvarez-Galvez
Louise Hooker
Dan P Stark
Ana Martins
Sarah Lea
author_facet Stephen Morris
Rosalind Raine
Faith Gibson
Rachel M Taylor
Jeremy Whelan
Richard Feltbower
Lorna A Fern
Julie Barber
Javier Alvarez-Galvez
Louise Hooker
Dan P Stark
Ana Martins
Sarah Lea
author_sort Stephen Morris
collection DOAJ
description Objectives In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children’s cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTCDesign Longitudinal cohort study.Setting Hospitals delivering inpatient cancer care in England.Participants 1114 young people aged 13 to 24 years newly diagnosed with cancer.Intervention Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care.Primary outcome Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis.Results Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups.Conclusions Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.
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spelling doaj-art-e28dd7d3fef8442f8d92af63978e13112025-08-20T02:27:50ZengBMJ Publishing GroupBMJ Open2044-60552020-11-01101110.1136/bmjopen-2020-038471Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT studyStephen Morris0Rosalind Raine1Faith Gibson2Rachel M Taylor3Jeremy Whelan4Richard Feltbower5Lorna A Fern6Julie Barber7Javier Alvarez-Galvez8Louise Hooker9Dan P Stark10Ana Martins11Sarah Lea12Department of Public Health and Primary Care, University of Cambridge, Cambridge, UKDepartment of Applied Health Research, University College London, London, UKFaculty of Health and Medical Sciences, University of Surrey, Guildford, UK7 CNMAR, University College London Hospitals NHS Foundation Trust, London, UKCancer Service, University College London Hospitals NHS Foundation Trust, London, UKUniversity of Leeds, Leeds, UK1 Cancer Division, University College London Hospitals NHS Foundation Trust, London, UKDepartment of Statistical Science, University College London, London, UKDepartment of Biomedicine, Biotechnology and Public Health, University of Cadiz, Cadiz, Spain7 Wessex Teenage and Young Adult Cancer Service, University Hospital Southampton, Southampton, UKLeeds Insitute of Molecular Medicine, University of Leeds, Leeds, UK2Department of Anesthesiology, Centro Hospitalar Vila Nova de Gaia/Espinho, Vila Nova de Gaia, PortugalCancer Service, University College London Hospitals NHS Foundation Trust, London, UKObjectives In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children’s cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTCDesign Longitudinal cohort study.Setting Hospitals delivering inpatient cancer care in England.Participants 1114 young people aged 13 to 24 years newly diagnosed with cancer.Intervention Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care.Primary outcome Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis.Results Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups.Conclusions Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.https://bmjopen.bmj.com/content/10/11/e038471.full
spellingShingle Stephen Morris
Rosalind Raine
Faith Gibson
Rachel M Taylor
Jeremy Whelan
Richard Feltbower
Lorna A Fern
Julie Barber
Javier Alvarez-Galvez
Louise Hooker
Dan P Stark
Ana Martins
Sarah Lea
Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
BMJ Open
title Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
title_full Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
title_fullStr Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
title_full_unstemmed Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
title_short Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study
title_sort longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life outcomes from the brightlight study
url https://bmjopen.bmj.com/content/10/11/e038471.full
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