Abstract

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.

Highlights

  • Adolescents and young adults (AYA) diagnosed with cancer between the age of 18 and 35 are a distinct group compared to paediatric and adult oncology patients

  • The results of the current study indicate that there is a considerable discrepancy in the level of impact cancer and its treatment have on health-related quality of life (HRQoL) in AYA cancer patients and the level perceived by health care professionals (HCP)

  • AYA cancer patients rated most HRQoL items as less problematic than HCPs, indicating that professionals believe that the burden of cancer and treatment is larger than it is perceived by patients themselves

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Summary

Introduction

Adolescents and young adults (AYA) diagnosed with cancer between the age of 18 and 35 are a distinct group compared to paediatric and adult oncology patients. While improvements in cancer survival in AYA patients lag behind those in children and adults, about 80% of AYA cancer patients in the Netherlands will survive at least five years [5]. These AYA survivors are in a phase of life where they normally reach developmental milestones such as completing education, establishing intimate relationships, pursuing gainful employment and having children [6]. Measuring HRQoL in AYAs allows physicians to better manage the complexity of caring for AYAs with cancer [10,13,14,15]

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