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

Abstract

ObjectivesIn 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-PTCDesignLongitudinal cohort study.SettingHospitals delivering inpatient cancer care in England.Participants1114 young people aged 13 to 24 years newly diagnosed with cancer.InterventionExposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care.Primary outcomeQuality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis.ResultsGroup 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.ConclusionsReceipt 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.

Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE)

“…These have been recently demonstrated to improve important clinical outcomes. 57 Data on costs are submitted for publication, including individuals, carers and health care systems. In the USA, to serve a population of 331 million, there are specialist teams in 42 hospitals, focussing upon out-patient and supportive care.…”

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial

“…As we did not build in measurements indexing response-shift, we cannot preclude this having had an impact on our quality of life-related outcomes. Recent longitudinal data from the BRIGHTLIGHT place of care study in the UK may echo this pattern; their data highlighted that AYAs receiving some or all of their care in hospital units specifically tailored for teenagers and young adults unexpectedly reported poorer quality of life over time, compared to AYAs who had received no care in such age-appropriate spaces [ 101 ]. The potential for the unintended, paradoxical effects of providing AYAs with peer- and cancer-related support warrants further study.…”

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

“…Centralization and coordination between services are key to these models, but for some of these participants, they experienced ‘gaps’, raising concerns about inequalities. Such services are now the focus of evaluation studies where professionals are learning from young people and their family members about how they experience services over time and in a range of settings; not all of which might be described as age‐appropriate 1,20‐22 . Inpatient care was only one aspect of participants' concerns, and questions were also raised about availability and coordination of services beyond initial treatment, what might be referred to as support services, for example psychological care 1 and long‐term follow‐up care 23,24 .…”