Background Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer Survivor Study (DCCSS) cross-sectional clinical study (LATER 2 study). Procedure From the multi-center DCCSS LATER cohort of 6,165 five-year survivors diagnosed 1963-2001, we invited 4,735 eligible in 2016, as well as siblings and parents of survivors. Gaps in evidence identified during development of surveillance guidelines were translated into clinical research questions for 16 outcome-specific sub-projects. The regular care visit to the LATER outpatient clinic forms the backbone of outcome assessment complemented with research-defined measurements (physical examination, diagnostic tests, questionnaires). Furthermore, blood/saliva samples were taken for DNA extraction. Results In total, 2519 (53.2%) survivors participated in the LATER 2 study. Of those participating survivors, 49.3% was female. Median time since childhood cancer diagnosis was 26.9 years (range 14.8 to 54.7 years) and median attained age was 34.4 years (range 15.4 to 66.6 years). Conclusions The high-quality data generated in the LATER 2 study will provide valuable insights into risks of and risk factors for clinical and (psychosocial) health outcomes and factors for early recognition of (psychosocial) health outcomes in long-term childhood cancer survivors. This will contribute to fill in important gaps in knowledge and improve the quality of life and care for childhood cancer survivors.

Background Understanding the long-term psychosocial impact of pediatric hematopoietic stem cell transplantation (HSCT) for non-malignant diseases is needed in order to optimize pre-HSCT counseling, supportive care, and long-term follow up programs after HSCT for this group of patients and caregivers. Procedure This qualitative study included 14 patients transplanted for a non-malignant disease during childhood. In-depth interviews were held online to explore patients’ perspectives on the long-term psychosocial impact of HSCT on their lives. Results were analyzed based on the Grounded Theory approach. Results Patients’ median age at the time of interview was 19 years (range 14-49) and median years after HSCT was 12 years (range 3-33). Four main themes were identified: (1) Doing okay, (2) Experiencing persistent involvement with healthcare services, (3) Influence on relationships with loved ones, and (4) Impact on patient’s life course. Subthemes extracted were doing okay, feeling of being cured, health limitations, sense of vulnerability, ongoing connection to the hospital, acceptance, friendship, family relations, development of own identity, not taking life for granted, social development, impact on (school) career, and thinking about the future. Conclusions Patients reported active coping strategies and resilience after this high-impact treatment. The data highlight the need for patient-adjusted supportive care, indicating more need of supportive care in the long-term outpatient clinic.