Health-related quality of life (HRQoL) measurement among adolescents and young adults (AYA) with cancer is instrumental to identify areas of need and to organize age-specific psychosocial care. Health care professionals (HCP) are not always aware of what matters most to patients. The aims of the current study were to determine top 10 HRQoL priorities relevant to AYA cancer patients and HCP and to determine discrepancies between items prioritized by AYA and HCP.
Patients aged 18 to 35 years at time of cancer diagnosis and who had been seen by one of the members of the multidisciplinary AYA team of Radboud university medical center in the Netherlands, and Dutch HCP involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire.
83 AYA cancer patients and 34 HCP completed the questionnaire. Patients scored significantly lower on negatively formulated HRQoL issues (e.g. fatigue, coping difficulties, feeling isolated) and significantly higher on positive formulated issues (e.g. support from others, overall physical health, happiness). Most important HRQoL items scored by AYA patients were: perceived support from others, distress about initial cancer diagnosis, distress for family, overall quality of life and happiness. HCP perceived distress about initial cancer diagnosis, distress for family, cancer treatment distress, interference of illness with employment/study and fatigue as most important HRQoL items. Patients and HCP had a congruence on 5 out of 10 HRQoL items where distress about initial cancer diagnosis, distress for family and cancer treatment distress were the main overlapping issues. There was a incongruence on fatigue, sexuality and concerns about fertility as these items only appeared in the top 10 HRQoL items rated by HCP and not in the top 10 for AYA patients.
AYA cancer patients perceived most HRQoL items as less problematic in comparison to HCP, in particular regarding physical symptoms, psychological and social HRQoL issues. The discrepancy between patients and HCP illustrates the importance of patient participation, i.e. involving patients in organizing and prioritizing their own (psychosocial) care.
Clinical trial identification
Legal entity responsible for the study
Radboud University Medical Center.
Has not received any funding.
All authors have declared no conflicts of interest.