Back to school - The teachers' worries and needs having a childhood cancer patient or survivor in their class

BACKGROUND: A cancer diagnosis during childhood or adolescence causes nursery and school absences to various degrees. Attending school and meeting classmates gives many children and adolescents some normality back. Nevertheless, it can cause fears and concerns among the teachers. We are currently lacking information about the fears and needs of teachers having a child or adolescent diagnosed with cancer or with a cancer history in their classes. With this study, we aim to close this knowledge gap and assess the teachers' fears, worries and information needs having a child or adolescent diagnosed with cancer in the class to develop a suitable information tool (flyer). METHODS: We performed an online survey including teachers covering all grades from nursery to vocational school within the catchment area of our hospital. The survey included separate questions for experience with students still receiving active treatment and those in follow-up care. Answer options included tick boxes and open-ended questions, which we grouped thematically. We used descriptive analysis to describe the survey findings, resulting in a newly developed flyer. RESULTS: In total 358 teachers participated in the survey, 80% were female, 63% worked in nursery or primary school. One quarter (26%) had experience with a student diagnosed with cancer. Most teachers with (81%) and without (85%) experience reported at least one concern. The top three concerns reported were: (1) how to inform the class, (2) the resilience of the student and (3) how to deal with the student and his or her family. The teachers preferred oral information by physicians or parents and written information equally. Information on resilience, guidelines with an emergency situation, and the need for cancer-specific information were considered important by about 75-94% of the teachers. CONCLUSION: Most teachers reported concerns, which we cover in a newly developed information flyer. However, such a flyer cannot replace individual communication between health care professionals and teachers. The identified concerns are likely to be transferable to other school systems and countries

Feasibility of a registry for standardized assessment of long-term and late-onset health events in survivors of childhood and adolescent cancer

Childhood and adolescent cancer survivors are at risk for chronic medical conditions. Longitudinal studies help to understand their development and course. We hypothesize that collecting follow-up data according to the modified CTCAE criteria and embedded in regular care, is feasible and results in a rich database. We recruited 50 Swiss survivors treated at our institution between 1992 and 2015, who completed their treatment and are still alive. Information on cancer diagnosis, treatment, and medical conditions from follow-up visits, graded according to the modified CTCAE criteria, were added in the database. We described the cohort, assessed the prevalence of medical conditions at the most recent visits and the time needed for data entry. Survivors had a median age of 10 years at diagnosis with 16 years of follow-up. 94% of survivors suffered from at least one medical condition. We registered 25 grade 3 or 4 conditions in 18 survivors. The time needed for data entry at enrollment was < 60 min in most survivors and much less for follow-up visits. Standardized assessment of medical conditions is feasible during regular clinical care. The database provides longitudinal real-time data to be used for clinical care, survivor education and research

Long-Term Follow-Up of Pediatric CNS Tumor Survivors-A Selection of Relevant Long-Term Issues

Introduction: Survivors of pediatric central nervous system (CNS) tumors are at high risk for late effects and long-term morbidity. The quality of survival became increasingly important, as advances in diagnostics, multimodal treatment strategies, and supportive care have led to significant increases in long-term survival. Aim: This review aims to provide a global overview of the potential late effects and long-term follow-up care of CNS tumor survivors, directed to trainees and practitioners with less targeted training in pediatric oncology. Late effects in CNS tumor survivors: A specific focus on CNS tumor survivors relies on cognitive and psychosocial late effects, as they may have an impact on education, professional career, independent living, and quality of life. Further important late effects in CNS tumor survivors include endocrine, metabolic, cardiovascular, and cerebrovascular diseases. Conclusions: Comprehensive long-term follow-up care is essential for pediatric CNS tumor survivors to improve their quality of survival and quality of life. An individualized approach, taking all potential late effects into account, and carried out by an interdisciplinary team, is recommended, and should continue into adulthood. Existing recommendations and guidelines on long-term follow-up care guide the multidisciplinary teams

Quality criteria for pediatric oncology centers: A systematic literature review

INTRODUCTION Survival of children and adolescents diagnosed with cancer improved over the last decades due to better diagnostics, treatment, and supportive care. Quality criteria that measure, compare, and make the quality of care of individual pediatric oncology centers more transparent are heterogeneous and inconsistent. AIM With this systematic review, we aimed to summarize existing quality criteria for pediatric oncology centers in countries with highly developed health-care systems. METHODS We searched three databases for publications, and websites for guidelines about quality criteria for pediatric oncology centers in February 2022. We considered all types of publications except expert opinions. We excluded publications not focusing on highly developed health-care systems, addressing the certification of professionals, or focusing on subspecialties (e.g., pediatric neuro-oncology). We discarded quality criteria if they were too specific (e.g., for a specific treatment center), too broad (e.g., national 5-year overall survival), or if the aspect was covered by standardized clinical procedures or at the national level. We grouped the identified criteria thematically. RESULTS We identified 18 publications and guideline documents with 530 criteria, of which 201 fulfilled the inclusion criteria. The combination of similar criteria resulted in 90 overarching criteria, which we assigned to the following categories: facilities and networks, multidisciplinary team and other experts, supportive care, treatment, long-term care, and volume and numbers. CONCLUSION Our results provide a comprehensive overview of existing quality criteria for pediatric oncology in countries with highly developed health-care systems. These criteria can serve as a basis to develop national quality criteria in pediatric oncology

Late effects of high-dose methotrexate treatment in childhood cancer survivors-a systematic review

BACKGROUND: High-dose methotrexate (HD-MTX) is used in the treatment of different childhood cancers, including leukemia, the most common cancer type and is commonly defined as an intravenous dose of at least 1 g/m$^{2}$ body surface area per application. A systematic review on late effects on different organs due to HD-MTX is lacking. METHOD: We conducted a systematic literature search in PubMed, including studies published in English or German between 1985 and 2020. The population of each study had to consist of at least 75% childhood cancer survivors (CCSs) who had completed the cancer treatment at least twelve months before late effects were assessed and who had received HD-MTX. The literature search was not restricted to specific cancer diagnosis or organ systems at risk for late effects. We excluded case reports, case series, commentaries, editorial letters, poster abstracts, narrative reviews and studies only reporting prevalence of late effects. We followed PRISMA guidelines, assessed the quality of the eligible studies according to GRADE criteria and registered the protocol on PROSPERO (ID: CRD42020212262). RESULTS: We included 15 out of 1731 identified studies. Most studies included CCSs diagnosed with acute lymphoblastic leukemia (n = 12). The included studies investigated late effects of HD-MTX on central nervous system (n = 10), renal (n = 2) and bone health (n = 3). Nine studies showed adverse outcomes in neuropsychological testing in exposed compared to non-exposed CCSs, healthy controls or reference values. No study revealed lower bone density or worse renal function in exposed CCSs. As a limitation, the overall quality of the studies per organ system was low to very low, mainly due to selection bias, missing adjustment for important confounders and low precision. CONCLUSIONS: CCSs treated with HD-MTX might benefit from neuropsychological testing, to intervene early in case of abnormal results. Methodological shortcomings and heterogeneity of the tests used made it impossible to determine the most appropriate test. Based on the few studies on renal function and bone health, regular screening for dysfunction seems not to be justified. Only screening for neurocognitive late effects is warranted in CCSs treated with HD-MTX

Interventions to improve neurocognitive late-effects in pediatric and adolescent CNS tumor patients and survivors - a systematic review

INTRODUCTION Survival of children and adolescents diagnosed with central nervous system (CNS) tumors massively improved over the last decades due to better diagnostics, treatment, and supportive care. However, morbidity is still the highest of all cancer entities in this age group with neurocognitive late-effects being one of the most severe. AIM With this systematic review, we aim to summarize interventions designed to prevent or improve neurocognitive late-effects in CNS tumor patients. METHOD We searched PubMed on August 16$^{th}$ 2022 and included publications studying interventions for neurocognitive late-effects in pediatric and adolescent patients and survivors diagnosed with a CNS tumor. We included any form of neurocognitive intervention during treatment or following treatment completion. We considered all types of studies except for expert opinions and case reports. RESULTS The literature search resulted in 735 publications. We included 43 publications in the full text screening and 14 met our inclusion criteria. Of those, two assessed the impact of pharmacological interventions, three of exercise interventions, five of online cognitive training, and four assessed behavioral interventions. Different neuropsychological test batteries and imaging were used to measure the impact of the respective interventions. Most studies showed a positive impact of the interventions in single to several of the subtests used. CONCLUSION We found several intervention studies indicating improvement of neurocognitive problems in children and adolescent CNS tumor survivors. In this population exercise interventions or online cognitive training might mitigate or improve neurocognitive late-effects

Cancer knowledge and health-consciousness in childhood cancer survivors following transition into adult care-results from the ACCS project

BACKGROUND: Knowledge on chronic medical conditions in childhood cancer survivors (CCSs) is constantly growing and underlines that long-term follow-up (LTFU) care is often mandatory, also in adulthood. However, many CCSs discontinue follow-up care after transition to adult care. One reason might be that the current transition practices do not meet the needs of adolescent and young adult CCSs. We therefore aim to evaluate different transition models for Swiss CCSs by assessing their cancer knowledge, cancer worries, self-management skills, and expectations for LTFU care, following transition in two different hospital-based models. METHODS: Within the Aftercare of Childhood Cancer Survivors (ACCS) study, we performed a questionnaire-based survey with a cross-sectional and longitudinal part. We included 5-year CCSs aged >16 years at recruitment who were transitioned to adult care in two hospitals between 2014 and 2021. Here, we report the results of the cross-sectional part. We compared the survivors' cancer knowledge with medical record data and assessed cancer worries (6 questions), self-management skills (15 questions), and expectations (12 questions) by validated scales. We used descriptive statistics, chi-squared test, and t-tests to describe the results. RESULTS: We analyzed 57 CCSs (response rate 44%), 60% of those were female, had a median age of 9 years at diagnosis and 23 years at the questionnaire. Most CCSs recalled their diagnosis (95%) and exposure to treatment modalities (98%) correctly. CCSs worried the most about potential late effects (47%) and issues with having children in the future (44%). At least 75% of CCSs agreed to 12 of the 15 self-management questions, indicating high self-management skills. The top three expectations included that physicians know the survivors' cancer history, that visits start on time, and that physicians can always be called in case of questions. CONCLUSION: CCSs receiving hospital-based LTFU care have good cancer knowledge and high self-management skills. The identified worries and expectations will help to improve the LTFU care of CCSs who transition to adult care, to further inform and educate survivors and healthcare professionals about and might be relevant for other countries with a similar healthcare system

Pediatric-Inspired Regimens in the Treatment of Acute Lymphoblastic Leukemia in Adolescents and Young Adults: A Systematic Review

Adolescents and young adults (AYA) with acute lymphoblastic leukemia (ALL) have significantly worse outcomes than their younger counterparts. Current treatment guidelines rely mostly on non-randomized retrospective studies. We performed a systematic review of studies published within the last 15 years comparing pediatric-inspired regimens (PIR) versus adult-type regimens or performing an age-stratified analysis of outcomes in the AYA population. Due to the heterogeneity of data, a meta-analysis was not possible. However, the gathered data show a trend toward improvement in outcomes and an acceptable toxicity profile in patients treated with PIRs compared to conventional adult-type regimens. There is still room for further improvement, as older patients within the AYA population tend to perform poorly with PIR or conventional adult-type chemotherapy. Further randomized studies are needed to develop an optimal treatment strategy for AYA with ALL

A national survey of Swiss paediatric oncology care providers' cross-cultural competences.

BACKGROUND AND PURPOSE Culturally diverse countries such as Switzerland face the challenge of providing cross-cultural competent care. Cross-cultural competent care needs an understanding of a patient's cultural context in order to provide safe and effective care. Therefore, we sought to examine cross-cultural competence of Swiss paediatric oncology care providers, and to explore their perceptions of barriers to and facilitators of cross-culturally competent care. DESIGN AND SAMPLE We conducted a cross-sectional study. The data collection period was three weeks. Providers were recruited through collaborators at the participating paediatric oncology centres. All occupational groups who are in direct contact with patients and involved in their care were eligible (e.g., physicians, nurses, social workers, occupational therapists and physiotherapists). Surveying providers online, we captured five subscales of their cross-cultural competence and their perceptions as to how to facilitate cross-culturally competent paediatric oncology care. We employed the Cross-Cultural Competence of Healthcare Professionals (CCCHP) questionnaire. Besides descriptive and inferential statistics, we performed content analysis. FINDINGS The response rate was 73.2% (n = 183/250). Analyses revealed differences in cross-cultural competence between occupational groups of paediatric oncology providers. Overall, social workers' cross-cultural competence was higher than nurses' or occupational therapists' and physiotherapists' cross-cultural competence. Physicians' cross-cultural competence was higher than nurses (with no statistically significant difference identified between physicians, occupational therapists and physiotherapists). Furthermore, our results suggest noteworthy differences among the four main occupational groups on the five CCCHP subscales. Physicians and social workers declared more positive attitudes than nurses; occupational therapists and physiotherapists reported lower skills than the other three groups; social workers scored higher on the emotions and empathy subscale than the other three groups; physicians were more knowledgeable and aware than nurses. Most frequently mentioned barriers were: language barriers (68.5%), different culture and values (19.2%), different illness understanding (9.2%). Most frequently mentioned facilitators were: professional translators (47.2%), continuous training (20.8%), professional cultural mediators (8.8%). CONCLUSIONS/IMPLICATIONS Trainings and interventions are widely considered a principal strategy to advance providers' cross-cultural competence. Our findings of differences in cross-cultural competence among occupational groups further underpin the need to adapt training programmes and interventions to the respective occupational group and the respective dimension(s) of cross-cultural competence. In addition, professional translators and cultural mediators should be used. Lastly, reciprocal supervision and the promotion of multidisciplinary teams is crucial to enable oncology care providers to learn from each other and this exchange could also help to reduce some of the differences between the various occupational groups

Education, Employment, and Financial Outcomes in Adolescent and Young Adult Cancer Survivors-A Systematic Review.

Adolescents and young adults (AYAs) with cancer face unique challenges. We aimed to describe (i) education, employment, and financial outcomes and (ii) determinants for adverse outcomes in AYA cancer survivors. We performed a systematic literature search. We included original research articles on AYA (15-39 years of age) cancer survivors (≥2 years after diagnosis) and our outcomes of interest. We narratively synthesized the results of the included articles. We included 35 articles (24 quantitative and 11 qualitative studies). Patients in education had to interrupt their education during cancer treatment, and re-entry after treatment was challenging. After treatment, most survivors were employed but started their employment at an older age than the general population. Overall, no disadvantages in income were found. Survivors reported more absent workdays than comparisons. We identified chemotherapy, radiotherapy, late effects or health problems, female sex, migration background, and lower education associated with adverse outcomes. Although most AYA cancer survivors were able to re-enter education and employment, they reported difficulties with re-entry and delays in their employment pathway. To facilitate successful re-entry, age-tailored support services should be developed and implemented