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

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-PTC DESIGN: 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.

Keywords: oncology; organisation of health services; quality in health care.

Figure 1

Participation at each wave of data collection. *Drop-outs between waves due to death, permanent opt-out or wave opt-out. Wave opt-outs prior to being issued were not permanent opt-outs; participants could opt-out of a single wave but participate in subsequent waves; these cases were not removed from the cohort permanently.

Figure 2

Mean PedsQL (Paediatric Quality of Life Questionnaire) total score over time since diagnosis (with 95% CIs). Graph based on data collected in Waves 1 to 5, plotted against median time since diagnosis. TYA, teenagers and young adults; TYA-PTC, TYA principal treatment centres.

Figure 3

Subgroup investigations for cancer type (leukaemia/lymphoma v other) and age group (<19 v 19+): Results from adjusted* random effects models with interaction terms (n=733). *Model with a random effect for city and adjustment for time since diagnosis, age at diagnosis, type of cancer, socioeconomic status, severity of cancer, ethnicity, choice about where to receive treatment, long-term condition prior to cancer, days from first symptom to diagnosis, number of general practitioner visits before diagnosis. v, versus.

Figure 4

Mean PedsQL (Paediatric Quality of Life Questionnaire) physical functioning domain scores over time since diagnosis (with 95% CIs). (Graphs based on data collected in Waves 1 to 5, plotted against median time since diagnosis).TYA, teenagers and young adults; TYA-PTC, TYA principal treatment centres.

Figure 5

Mean PedsQL (Paediatric Quality of Life Questionnaire) emotional functioning domain scores over time since diagnosis (with 95% CIs). (Graphs based on data collected in Waves 1 to 5, plotted against median time since diagnosis). TYA, teenagers and young adults; TYA-PTC, TYA principal treatment centres.

Figure 6

Mean PedsQL (Paediatric Quality of Life Questionnaire) social functioning domain scores over time since diagnosis (with 95% CIs). (Graphs based on data collected in Waves 1 to 5, plotted against median time since diagnosis). TYA, teenagers and young adults; TYA-PTC, TYA principal treatment centres.

Figure 7

Mean PedsQL (Paediatric Quality of Life Questionnaire) work/school/college functioning domain scores over time since diagnosis (with 95% CIs). (Graphs based on data collected in Waves 1 to 5, plotted against median time since diagnosis). TYA, teenagers and young adults; TYA-PTC, TYA principal treatment centres.

Figure 8

Mean PedsQL (Paediatric Quality of Life Questionnaire) psychosocial summary score scores over time since diagnosis (with 95% CIs). (Graphs based on data collected in Waves 1 to 5, plotted against median time since diagnosis).