Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals

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.

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

“…Defining a standardized core outcome set with PROs and clinical outcomes, specifically for AYAs, may lead to the collection and report of AYA-specific standardized outcomes, which will enable the comparison of outcomes across different levels (e.g., patients, studies, countries). The input of AYAs themselves is of importance to compose core outcome sets and develop AYA-specific outcome measures that are relevant to them, take into account their developmental phase, and target their needs [ 137 , 160 ]. Table 2 provides a summarizing overview of the key points of AYA-specific survivorship research.…”

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes

“…However, our results show that, while a higher age was negatively associated with physical symptoms, patients aged between 18 and 39 years scored significantly worse on several of the DTF-QoL impact scales. Younger DTF patients reported similar concerns to adolescent and young adult (AYA) cancer patients, e.g., concerns about their ability to have children [ 37 , 38 ]. The greater impact of DTF on younger patients can be explained by the fact that these patients define their identity in this period of their lives, face important life choices and often have high expectations of themselves at work and in their social lives [ 38 ].…”

Psychosocial Distress Due to Interference of Normal Developmental Milestones in AYAs with Cancer

“…Monteiro et al found that emotional distress did not differ significantly between AYA cancer patients, AYA cancer survivors, and controls, although AYA cancer participants did experience lower QOL and personal growth compared to controls [52]. One study found that their perceptions of health-related quality of life (HRQOL) issues also tend to be more positive when compared to health care professionals; health care professionals rated AYAs' physical symptoms higher than AYAs while AYAs rated overall physical health, QOL, happiness, satisfaction, usefulness, and support from others significantly higher than health care professionals [53].…”