Life after Childhood Cancer: Long-Term Psychosocial Outcomes and Risk and Protective Factors in Adult Survivors of Childhood Cancer

Abstract

Thanks to advancements in the treatment of childhood cancer, the five-year survival rate has increased to approximately 80%, leading to a growing number of childhood cancer survivors (CCS). These CCS may experience long-term physical and psychosocial consequences. Therefore, it is important to better understand their long-term functioning. This thesis examines the psychosocial long-term outcomes of CCS, the factors that are associated with these outcomes, and the use of patient-reported outcome measures (PROMs) for systematically monitoring their health-related quality of life (HRQOL). The results, derived from the LATER Psycho-Oncology (LATER PSY) study, part of the Dutch Childhood Cancer Survivor Study (DCCSS), show that CCS have similar mental health compared to the general population. However, they score slightly lower on HRQOL, particularly regarding fatigue and health perceptions. Additionally, many CCS face survivor-specific worries, such as fear of cancer recurrence and worries about infertility. However, most CCS also report positive outcomes of childhood cancer, including feeling stronger as a person and having a greater appreciation for life. Psychosocial factors like illness perceptions, illness cognitions, self-esteem, and social support play a larger role than socio-demographic and medical characteristics in explaining psychosocial outcomes. The KLIK LATER study demonstrates that the KLIK method is a feasible and valuable tool for systematically monitoring and discussing HRQOL in survivorship care. As part of this method, CCS complete questionnaires (PROMs) about their HRQOL prior to the consultation, which are then discussed during the consultation with the healthcare provided. This thesis advocates for a stepped model of care for CCS, focusing on information provision, HRQOL monitoring, targeted interventions for mild issues, and specialized care for severe psychosocial problems. This model is essential for a holistic approach to the care of CCS, with special attention to vulnerable subgroups.