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.

IntroductionSince the initial attempts to treat children with renal cancer over 50 years ago, outcome for children with renal cancer has generally become promising. While the first endeavors mainly included surgical treatment, in the early 60s radiotherapy and chemotherapy were introduced, leading to cure of patients, including some with metastatic disease. (1) Since then, overall survival rates for the most common type of renal tumors in childhood (nephroblastoma or Wilms tumor) have improved to more than 90 percent. These excellent treatment outcomes are similar in the 2 largest clinical trial groups (the Children’s Oncology Group Renal Tumor Committee (COG-RTC; former National Wilms Tumor Study Group (NTWSG)), and the International Society of Pediatric Oncology Renal Tumor Study Group (SIOP-RTSG). Despite the difference in upfront treatment choice (primary surgery when feasible (COG-RTC) or preoperative chemotherapy (SIOP-RTSG)) both groups have optimized the stratification of patients in their trials by modifying the intensity of treatment according to individual risk factors, in order to improve outcome for high-risk renal tumor types, but also to reduce early and late toxicity in lower and intermediate risk tumors as much as possible. (2-4)This improvement in risk stratification has resulted in better outcomes and less cancer related toxicity. However, for remaining small subgroups of pediatric renal tumor patients, with very poor outcomes, further understanding of the underlying biology, in correlation with clinic-pathological characteristics, is an unmet need. Further, standard multidisciplinary treatment (surgery, radiotherapy, chemotherapy) can be challenging to access and/or deliver in some low and middle income countries (LMIC). The power inherent in international collaboration to address these challenges was a driving principle that supported the creation of the HARMONICA (HARMONIzation and COllaboration) initiative in 2015, when we established an organized collaborative structure for transatlantic experts from COG-RTC and SIOP-RTSG. The mandate of HARMONICA is to identify specific challenges for pediatric renal tumor subsets in order to meet the aims of our global approach to cure every child with a renal tumor with limited toxicity.The HARMONICA group meets at least once a month by videoconferences, and as much as possible also face to face, at least once or twice a year, during existing pediatric cancer conferences. In addition, several transatlantic HARMONICA expert subgroups are collaborating on specific topics. All work is currently done by a tremendous engagement of many enthusiastic members of both study groups. Despite the fact of obvious advantages, HARMONICA is still lacking funding and needs to optimize their structure as a legal entity. Notwithstanding such limitations, in this special issue of PBC, we present the achievements, the challenges, and the future perspectives, identified by these expert groups.

Background: Intensified treatment protocols have improved survival of pediatric oncology patients. However, these treatment protocols are associated with increased treatment-related morbidity requiring admission to pediatric intensive care unit (PICU). We aimed to describe the organizational characteristics and processes of care for this patient group across PICUs in Europe. Methods: A web-based survey was sent to PICU directors or representative physicians between February and June 2021. Results: Responses were obtained from 77 PICUs of 12 European countries. Organizational characteristics were similar across the different countries of Europe. The median number of PICU beds was 12 (IQR 8-16). The majority of the PICUs was staffed by pediatric intensivists and had a 24/7 intensivist coverage. Most PICUs had a nurse-to-patient ratio of 1:1 or 1:2. The median numbers of yearly planned and unplanned PICU admissions of pediatric cancer patients were 20 (IQR 10-45) and 10 (IQR 10-30, respectively. Oncology specific practices within PICU were less common in participating centres. This included implementation of oncology protocols in PICU (30%), daily rounds of PICU physicians on the wards (13%), joint mortality and morbidity meetings or complex patients’ discussions (30% and 40%, respectively) and participation of parents during clinical rounds (40%). Conclusion: Our survey provides an overview on the delivery of critical care for oncology patients in PICU across European countries. Multidisciplinary care for these vulnerable and challenging patients remains complex and challenging. Future studies need to determine the effects of differences in PICU organization and processes of care on patients’ outcome.

Introduction Survival of childhood cancer has increased over the past decades. This has led to the development of strategies aiming to enhance follow-up care and research, for which priorities may vary globally. We explored perspectives of an international healthcare workers panel. Methods Attendants of a meet-the-expert session on childhood cancer survivorship at the 2018 SIOP conference completed a survey about their view on important follow-up care and research aspects for survivors below and over 18 years. We analyzed overarching categories and subtopics, and compared Asian versus European and American healthcare workers. Results Fifty-eight participants from different medical specialties (67.2% pediatric oncologists) and continents (48.3% Asia, 39.7% Europe/America) responded. Follow-up care priorities for survivors below and over 18 years included physical care (39.3% ≤18 years, 35.9% >18 years) and healthcare structure (29.4%, 26.0%). Physical care was also the most important research aspect for both age groups (52.5%, 50.7%). Asian clinicians (n=22) primarily prioritized physical care aspects of follow-up care (48.0%, 45.6%), whereas European/American (n=19) clinicians underscored the importance of healthcare structure (43.9%, 34.4%). The main research priority category concerned physical care for all clinicians. Psychological support was the most frequently reported subtopic. Conclusion Physical care is the most important aspect of survivorship care and research according to clinicians from several continents. Asian and European/American respondents shared most priorities, however, healthcare structure was a more important category for European/American clinicians. The most common subtopic was psychological support, underlining also the need to involve psychologists in follow-up.