Psychosocial challenges of childhood cancer survivorship
Childhood cancer survivors (CCS) are a growing population facing unique challenges. This thesis aimed to increase the understanding of psychosocial challenges of childhood cancer survivorship.
The first part of this thesis contains two reports of large nation-wide cohort studies of health-related quality of life (HRQOL) in Dutch adult childhood cancer survivors. From both studies, we concluded that adult CCS are at a higher risk of worse HRQOL compared to peers from the general population. The studies stress the need for attention for vitality and cognition. Furthermore, female CCS seem to be impacted more severely by childhood cancer survivorship than their male counterparts.
The second part of this thesis describes the need for attention for young adult childhood cancer survivors (YACCS) as a distinct group. We concluded that YACCS are a vulnerable population. As a group, they reported worse psychosocial well-being than the general population. YACCS reported more anxiety and depression than the norm, lower HRQOL, and more fatigue. Despite this vulnerability, many YACCS go through normal psychosocial development, and also experience positive impact of cancer besides negative impact. Nevertheless, over 80% of YACCS reported a need for support, especially for information and counseling related to late effects of childhood cancer and lifestyle.
To support optimal quality of life, we developed and evaluated Op Koers Online for YACCS. The study of this e-health intervention provided a first indication of the feasibility and potential effectiveness in improving psychosocial outcomes.
Our research shows the need of specialized survivorship care throughout the lifespan.