Abstract

PurposeThis study investigated health-related quality of life (HRQOL) and psychological distress among young adult (YA) survivors of childhood cancer and the association of these measures with treatment, education, and demographic factors ≥ 5 years post diagnosis.MethodsParticipants included cancer survivors (n = 91) recruited through the Cancer Registry of Norway (CRN) and healthy controls (n = 223) recruited from a student population. All participants completed self-report questionnaires, and the Pediatric Quality of Life Inventory (PedsQL™) 4.0 and the Hopkins Symptom Checklist-10 (HSCL-10) as a measure of HRQOL and distress, respectively.ResultsSurvivors reported HRQOL at the same level as controls, except for poorer physical functioning. Survivors in general, and female survivors specifically, had higher odds than controls of reporting symptoms of distress above cut-off, but survivors did not have higher mean levels of distress compared to controls. Survivors reporting distress levels above the cut-off had significantly poorer HRQOL regarding physical functioning and lower total PedsQL scores than controls scoring above the cut-off. Age (for HRQOL only), female gender, low educational level, and perceived low economic status significantly predicted HRQOL and distress. Education interacted with the effect of cranial radiation in predicting HRQOL.ConclusionsSurvivors reported similar mean levels of HRQOL and distress as controls, except for physical functioning. For cancer survivors, demographic variables predicted HRQOL and distress. Some groups of survivors require closer follow-up, and more attention should be paid to factors associated with poor HRQOL and psychological distress in survivors, including female gender, lower education level, and lower income. Survivors treated with cranial radiation may be particular vulnerable in combination with low education regarding HRQOL.

Highlights

  • Improvements in survival rates for childhood cancers have contributed to an increased focus on late effects of treatment among long-term survivors (≥ 5 years post diagnosis) [1].1 3 Vol.:(0123456789)Qual Life Res (2018) 27:529–537 serious problems may occur during cancer therapy or soon after, the majority of problems do not become clinically apparent until years after the cancer has been cured [2]

  • Comparing survivor and control means on PedsQL and HSCL revealed no significant differences on total scale PedsQL t(120) = − 1.47, p = .144, or HSCL t(133) = 1.45, p =

  • For male survivors and controls, an independent samples t test resulted in no significant differences between means on PedsQL or HSCL

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Summary

Introduction

Serious problems may occur during cancer therapy or soon after, the majority of problems do not become clinically apparent until years after the cancer has been cured [2] This highlights the need for young adult (YA) survivors of childhood cancers to be evaluated for long-term effects when transitioning into adult-centred health care [3]. Health-related concerns about the future, and whether they will be able to establish their own family, as underlined by Zebrack et al [8], may contribute to persistent distress for YA survivors This increases the need for knowledge on how disease and treatment affect later the psychological functioning as well as health-related quality of life (HRQOL). HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as perceived by patients [9, 10]

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