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

Cancer usually causes various health problems, and affected people suffer from a lower quality of life and reduced well-being in physical, psychological or social contexts. Yet patients also experience positive aspects, such as the great support they receive from others. But do patients experience these effects in the same way as health care professionals believe these problems to be relevant?

To investigate this question, a study from the Netherlands asked young patients diagnosed with cancer between the ages of 18 and 35 about their health-related quality of life. Furthermore, health care professionals, such as oncologists, psychologists and social workers, were interviewed. They all completed the Quality of Life for Cancer Survivors questionnaire, covering a range of topics from fatigue and sleep to appetite, pain and nausea, psychological well-being, family stress and financial difficulties, among many others.

Interesting results are to be reported: Both interviewed groups, patients and health care professionals, report the following as the highest (estimated) issues in the area of negative factors: Distress initial cancer diagnosis, Distress family and Cancer treatment distress. Nevertheless, there is a significant discrepancy between the estimations of health care professionals regarding the effects of cancer on those affected and the actual experiences of the young patients. Basically, the patients are less affected than assumed by the health care professionals and – quite the opposite – they even highlight positive effects such as social support and hope.

This study clearly points out the importance of direct engagement with patients. It is crucial to listen to their own voices and to include their own experiences when organizing or improving physical and psychosocial care.