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Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late effects. We aimed to describe preferences for different organisational aspects and models of follow-up care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16 years), registered in the Swiss Childhood Cancer Registry ( SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4-point scales, 0-3). Clinical information was available from the SCCR. Survivors ( n = 314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons ( p < .001). They rated checking for cancer recurrence (mean = 2.78, SD = 0.53) and knowing about risks for my children most important (mean = 2.22, SD = 0.83). They preferred to attend a children's hospital (mean = 1.94, SD = 1.11), adult hospital (mean = 1.86, SD = 0.98) or general practitioner (mean = 1.86, SD = 1.01) rather than a central specialised late effects clinic (mean = 1.25, SD = 1.06, p < .001), and be seen by paediatric (mean = 2.24, SD = 0.72) or medical oncologist (mean = 2.17, SD = 0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors' preferences should be considered to ensure future attendance. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the paper "Missing ligand model in autologous stem cell transplantation" by W. Leung, R. Handgretinger, V. Turner and G.A. Hale in the 2008 issue of "British Journal of Cancer."

Thromboembolism is a serious complication of induction therapy for childhood acute lymphoblastic leukemia. We prospectively compared the efficacy and safety of antithrombotic interventions in the consecutive leukemia trials ALL-BFM 2000 and AIEOP-BFM ALL 2009. Patients with newly diagnosed acute lymphoblastic leukemia (n=949, age 1 to 18 years) were randomized to receive low-dose unfractionated heparin, prophylactic low molecular weight heparin (enoxaparin) or activity-adapted antithrombin throughout induction therapy. The primary objective of the study was to determine whether enoxaparin or antithrombin reduces the incidence of thromboembolism as compared to unfractionated heparin. The principal safety outcome was hemorrhage; leukemia outcome was a secondary endpoint. Thromboembolism occurred in 42 patients (4.4%). Patients assigned to unfractionated heparin had a higher risk of thromboembolism (8.0%) compared with those randomized to enoxaparin (3.5%; P =0.011) or antithrombin (1.9%; P <0.001). The proportion of patients who refused antithrombotic treatment as allocated was 3% in the unfractionated heparin or antithrombin arms, and 33% in the enoxaparin arm. Major hemorrhage occurred in eight patients (no differences between the groups). The 5-year event-free survival was 80.9±2.2% among patients assigned to antithrombin compared to 85.9±2.0% in the unfractionated heparin group ( P =0.06), and 86.2±2.0% in the enoxaparin group ( P =0.10). In conclusion, prophylactic use of antithrombin or enoxaparin significantly reduced thromboembolism. Despite the considerable number of patients rejecting the assigned treatment with subcutaneous injections, the result remains unambiguous. Thromboprophylaxis - for the present time primarily with enoxaparin - can be recommended for children and adolescents with acute lymphoblastic leukemia during induction therapy. Whether and how antithrombin may affect leukemia outcome remains to be determined., (Copyright© 2019 Ferrata Storti Foundation.)

Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff., (© 2018 John Wiley & Sons Ltd.)

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians' and parents' perspectives and by evaluating factors associated with children's actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision examined, parents' and physicians' perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient's age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making.

Background: Previous studies on occupational exposures in parents and cancer risks in their children support a link between solvents and paints with childhood leukaemia. Few studies have focused specifically on benzene., Objectives: To examine whether parental occupational exposure to benzene is associated with an increased cancer risk in a census-based cohort of children., Methods: From a census-based cohort study in Switzerland, we included children aged <16years at national censuses (1990, 2000). We retrieved parental occupations reported at census and assessed exposure to benzene using a job exposure matrix. We identified incident cancer cases through record linkage with the Swiss Childhood Cancer Registry. We fitted Cox proportional-hazards models to assess associations between exposures and the following outcomes: any cancer, leukaemia, acute lymphoid leukaemia (ALL), acute myeloid leukaemia (AML), lymphoma, non-Hodgkin lymphoma, central nervous system (CNS) tumours, and glioma. We adjusted models for a range of socio-economic, perinatal and environmental factors., Results: Analyses of maternal (paternal) exposure were based on 9.0 (13.2)millionperson years at risk and included 1004 (1520) cases of cancer, of which 285 (438) had leukaemia, 186 (281) lymphoma, 227 (339) a CNS tumour. Maternal exposure was associated with an increased risk of childhood leukaemia (hazard ratio 1.73, 95% CI 1.12-2.67) and ALL (1.88, 1.16-3.04). We found little evidence of an association for other outcomes or for paternal exposure. Adjusting for potential confounders did not materially affect the results., Conclusions: This nationwide cohort study suggests an increased risk of leukaemia among children whose mothers were exposed to benzene at work., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes., Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding., Results: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent-child and physician-patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion., Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities.

PURPOSE OF THE STUDY Ewing sarcomas (ES) are the second most common solid malignant bone tumors in both, children and adolescents, and systemic chemotherapy protocols were established during the last 3 decades which proved to be a successful approach in addition to local treatment. The purpose of the present study is (i) to provide survival rates and prognostic factors for patients with ES which received treatment in a single center and (ii) to compare data with results of multicenter studies. MATERIALS AND METHODS Patients (n = 38) were treated by the same surgeon whereas surgery was combined with radiotherapy in 55.3% of the patients (n = 21). Median age at diagnosis was 17.5 years (4.7-60) and the median follow-up time for all patients was 8.2 years (9.8 years for survivors, 3.2 years for non-survivors). RESULTS The survival rate for metastasis free sarcoma decreases from 90.5% to 50% for patients diagnosed with disseminated disease stage. Patients with a good response to chemotherapy survived in 83.3% of the cases. In addition, a higher OS was found for patients younger than 15 years (82.4%) when compared to patients older than 15 years (73.3%). In contrast, multicenter studies reported lower survival rates for metastasis free (~60%) and metastasis stages (< 40%). DISCUSSION The survival rates in the present single center study are higher than the rates reported from multi-center studies although same chemotherapy protocols were used and no substantially difference are apparent for patient population. CONCLUSIONS Based on the present data we re-emphasize that patients with Ewing sarcoma receive appropriate treatment in a large and qualified center particularly considering the survival rates. In addition, our data underline that a close collaboration between the oncological team and the experienced surgeon is crucial for patient's care. Key words: Ewing sarcoma, survival rate, single center, prognostic factors, chemotherapy, surgery, multi center, single center.

Purpose: Despite recommendations, only a proportion of long-term childhood cancer survivors attend follow-up care. We aimed to (1) describe the follow-up attendance of young survivors aged 11-17 years; (2) describe the parental involvement in follow-up, and (3) investigate predictors of follow-up attendance and parental involvement., Methods: As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of childhood cancer survivors aged 11-17 years. We assessed follow-up attendance of the child, parents' involvement in follow-up, illness perception (Brief IPQ), and sociodemographic data. Clinical data was available from the Swiss Childhood Cancer Registry., Results: Of 309 eligible parents, 189 responded (67 %; mean time since diagnosis 11.3 years, range 6.8-17.2) and 75 % (n = 141) reported that their child still attended follow-up. Of these, 83 % (n = 117) reported ≥1 visit per year and 17 % (n = 23) reported <1 visit every year. Most survivors saw pediatric oncologists (n = 111; 79 % of 141), followed by endocrinologists (n = 24, 17 %) and general practitioners (n = 22, 16 %). Most parents (92 %) reported being involved in follow-up (n = 130). In multivariable and Cox regression analyses, longer time since diagnosis (p = 0.025) and lower perceived treatment control (assessed by IPQ4: how much parents thought follow-up can help with late effects; p = 0.009) were associated with non-attendance. Parents' overall information needs was significantly associated with parental involvement in the multivariable model (p = 0.041)., Conclusion: Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.

Background: Taking care of children diagnosed with cancer affects parents' professional life. The impact in the long-term however, is not clear. We aimed to compare the employment situation of parents of long-term childhood cancer survivors with control parents of the general population, and to identify clinical and socio-demographic factors associated with parental employment., Methods: As part of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to parents of survivors aged 5-15 years, who survived ≥5 years after diagnosis. Information on control parents of the general population came from the Swiss Health Survey (restricted to men and women with ≥1 child aged 5-15 years). Employment was categorized as not employed, part-time, and full-time employed. We used generalized ordered logistic regression to determine associations with clinical and socio-demographic factors. Clinical data was available from the Swiss Childhood Cancer Registry., Results: We included 394 parent-couples of survivors and 3'341 control parents (1'731 mothers; 1'610 fathers). Mothers of survivors were more often not employed (29% versus 22%; ptrend = 0.007). However, no differences between mothers were found in multivariable analysis. Fathers of survivors were more often employed full-time (93% versus 87%; ptrend = 0.002), which remained significant in multivariable analysis. Among parents of survivors, mothers with tertiary education (OR = 2.40, CI:1.14-5.07) were more likely to be employed. Having a migration background (OR = 3.63, CI: 1.71-7.71) increased the likelihood of being full-time employed in mothers of survivors. Less likely to be employed were mothers of survivors diagnosed with lymphoma (OR = 0.31, CI:0.13-0.73) and >2 children (OR = 0.48, CI:0.30-0.75); and fathers of survivors who had had a relapse (OR = 0.13, CI:0.04-0.36)., Conclusion: Employment situation of parents of long-term survivors reflected the more traditional parenting roles. Specific support for parents with low education, additional children, and whose child had a more severe cancer disease could improve their long-term employment situation.