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Population based studies on childhood cancer survival are key to monitor progress against cancer and to detect potential differences between regions and other subgroups in the population. We investigated time trends and factors associated with childhood cancer survival on a national level in Switzerland from 1976 to 2013. We extracted data from the population based Swiss Childhood Cancer Registry of 5776 children (age 0 14 years) diagnosed with cancer from 1985 to 2014 in Switzerland. We calculated age adjusted 5 year survival defined the annual reduction in risk of death (ARR) and explored associations of survival with clinical and demographic factors. Overall 5 year survival improved significantly from 64 in 1976 1983 to 88 in 2004 2013. ARR over the whole period was 4 for all diagnostic groups greatest for Hodgkin lymphomas (8) ependymomas (6) Burkitt's lymphomas (6) and germ cell tumours (6). Children treated in hospitals without specialised paediatric cancer centre for leukaemia (HR 12.9) lymphoma (HR 5.0) and neuroblastoma (HR 3.7) were at higher risk of death. In French speaking Switzerland risk of death was lower for lymphoma (HR 0.6) CNS tumours (HR 0.7) and neuroblastoma (HR 0.5). Children with migration background had a higher risk of death from all tumours except bone tumours. Childhood cancer survival significantly improved from 1976 to 2013 but there is room for further improvement. Survival rates varied by type of clinical treatment language region and nationality. All paediatric cancer patients should be referred to a specialised paediatric cancer centre. Further research is needed to intervene and completely eliminate inequalities in survival.

STRUCTURED ABSTRACTBackgroundIncidence of childhood cancer increased in most countries worldwide, but the reasons are unclear. This study investigates trends in childhood cancer incidence in Switzerland from 1985 to 2014.MethodsWe extracted data on all childhood cancer cases diagnosed at ages 0-14 years in Switzerland from the Swiss Childhood Cancer Registry. We included ICCC-3 main groups I-XII and calculated age-standardised, cumulative, and age-specific incidence for different diagnostic groups. We analysed trends in annual age-standardised incidence using JoinPoint regression models.ResultsOver the study period from 1985-2014, 5104 of 5486 cancer diagnoses (93%) were microscopically verified. The proportion of children treated in paediatric cancer centres increased from 84% during 1985-1994 to 93% in 1995-2004 and 98% in 2005-2014 (pConclusionTrends in incidence were driven mostly by increases among leukaemias and CNS tumours. For CNS tumours, observed trends may be explained at least partially by diagnostic changes and improved registration. For leukaemias, rising incidence may be real and at least partly due to changes in risk factors.HighlightsIn Switzerland, incidence of childhood cancer increased by 18% from 1985-2014.Increase in incidence was mainly caused by brain tumours and leukaemias.Improved registration and diagnostics may have increased brain tumour incidence.Increasing trend for leukaemias may be real, but reasons remain elusive.

Parents take an important role in follow-up of young cancer survivors. We aimed to investigate (1) parents' preferences for organisation of follow-up (including content, specialists involved and models of care), and (2) parents' and children's characteristics predicting preference for generalist vs. specialist-led follow-up. We sent a questionnaire to parents of childhood cancer survivors aged 11-17 years. We assessed on a 4-point Likert scale (1-4), parents' preferences for organisation of long-term follow-up. Proposed models were: telephone/questionnaire, general practitioner (GP) (both categorised as generalist for regression analysis); and paediatric oncologist, medical oncologist or multidisciplinary team (MDT) (categorised as specialists). Of 284 contacted parents, 189 responded (67%). Parents welcomed if visits included checking for cancer recurrence (mean = 3.89), late effects screening (mean = 3.79), taking patients seriously (mean = 3.86) and competent staff (mean = 3.85). The preferred specialists were paediatric oncologists (mean = 3.73). Parents valued the paediatric oncologist model of care (mean = 3.49) and the MDT model (mean = 3.14) highest. Parents of children not attending clinic-based follow-up (OR = 2.97, p = .009) and those visiting a generalist (OR = 4.23, p = .007) favoured the generalist-led model. Many parents preferred a clinic-based model of follow-up by paediatric oncologists or a MDT. However, parents also valued the follow-up care model according to which their child is followed up.

BACKGROUND Parents' knowledge about cancer treatment potential late effects and necessary follow up is important to reassure themselves and motivate their child to participate in regular follow up. We aimed to describe (i) parents' perception of information received during and after treatment; (ii) parents' current needs for information today and to investigate; and (iii) associations between information needs and socio demographic and clinical characteristics. METHODS As part of the Swiss Childhood Cancer Survivor Study a follow up questionnaire was sent to parents of survivors diagnosed 16 years and after 1990 and aged 11 17 years at study. We assessed parents' perception of information received and information needs concerns about consequences of the cancer and socio demographic information. Information on 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 SD?=?2.5). Parents perceived to have received verbal information (on illness: verbal 91 written 40; treatment: verbal 88 written 46; follow up: verbal 85 written 27; late effects: verbal 75 written 19). Many parents reported current information needs especially on late effects (71). The preferred source was written general (28) or verbal information (25) less favored was online information (12). Information needs were associated with migration background (P?=?0.039) greater concerns about consequences of cancer (P?=?0.024) and no information received (P?=?0.035). CONCLUSION Parents reported that they received mainly verbal information. However they still needed further information especially about possible late effects. Individual long term follow up plans including a treatment summary should be provided to each survivor preferably in written format. Pediatr Blood Cancer © 2015 Wiley Periodicals Inc.

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

The aetiology of childhood leukaemia remains largely unknown. Several hypotheses involve environmental exposures that could implicate spatial clustering of cases. The evidence from previous clustering studies is inconclusive. Most of them used areal data and thus had limited spatial resolution. We investigated whether childhood leukaemia tends to cluster in space using exact geocodes of place of residence both at the time of birth or diagnosis. We included 1,871 leukaemia cases diagnosed between 1985 and 2015 at age 0-15 years from the Swiss Childhood Cancer Registry. For each case, we randomly sampled 10 age and sex matched controls from national censuses closest in time. We used the difference of k-functions, Cuzick-Edwards' test and Tango's index for point data to assess spatial clustering and Kulldorff's circular scan to detect clusters. We separately investigated acute lymphoid leukaemia (ALL), acute myeloid leukaemia (AML), different age groups at diagnosis (0-4, 5-15 years) and adjusted for multiple testing. After adjusting for multiple testing, we found no evidence of spatial clustering of childhood leukaemia neither around time of birth (p = 0.52) nor diagnosis (p = 0.51). Individual tests indicated spatial clustering for leukaemia diagnosed at age 5-15 years, p k-functions = 0.05 and p Cuzick-Edwards' = 0.04 and a cluster of ALL cases diagnosed at age 0-4 years in a small rural area (p = 0.05). This study provides little evidence of spatial clustering of childhood leukaemia in Switzerland and highlights the importance of accounting for multiple testing in clustering studies.

Background: Taking care of children diagnosed with cancer affects parents’ professional life and may place the family at risk-of-poverty. We aimed to (i) compare the household income and risk-of-poverty of parents of childhood cancer survivors (CCS) to parents of the general population, and (ii) identify sociodemographic and cancer-related factors associated with risk-of-poverty. \ud \ud Methods: As part of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to parents of CCS aged 5–15 years, who survived ≥5 years after diagnosis. Information on parents of the general population came from the Swiss Household Panel (parents with ≥1 child aged 5–15 years). Risk-of-poverty was defined as having a monthly household income of

BACKGROUND Hearing loss is a potential late effect after childhood cancer. Questionnaires are often used to assess hearing in large cohorts of childhood cancer survivors and it is important to know if they can provide valid measures of hearing loss. We therefore assessed agreement and validity of questionnaire-reported hearing in childhood cancer survivors using medical records as reference. PROCEDURE In this validation study, we studied 361 survivors of childhood cancer from the Swiss Childhood Cancer Survivor Study (SCCSS) who had been diagnosed after 1989 and had been exposed to ototoxic cancer treatment. Questionnaire-reported hearing was compared to the information in medical records. Hearing loss was defined as ≥ grade 1 according to the SIOP Boston Ototoxicity Scale. We assessed agreement and validity of questionnaire-reported hearing overall and stratified by questionnaire respondents (survivor or parent), sociodemographic characteristics, time between follow-up and questionnaire and severity of hearing loss. RESULTS Questionnaire reports agreed with medical records in 85% of respondents (kappa 0.62), normal hearing was correctly assessed in 92% of those with normal hearing (n = 249), and hearing loss was correctly assessed in 69% of those with hearing loss (n = 112). Sensitivity of the questionnaires was 92%, 74%, and 39% for assessment of severe, moderate and mild bilateral hearing loss; and 50%, 33% and 10% for severe, moderate and mild unilateral hearing loss, respectively. Results did not differ by sociodemographic characteristics of the respondents, and survivor- and parent-reports were equally valid. CONCLUSIONS Questionnaires are a useful tool to assess hearing in large cohorts of childhood cancer survivors, but underestimate mild and unilateral hearing loss. Further research should investigate whether the addition of questions with higher sensitivity for mild degrees of hearing loss could improve the results.

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 followup 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 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 preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors’ preferences should be considered to ensure future attendance

INTRODUCTION: Little is known about the impact of childhood cancer on the personal income of survivors. We compared income between survivors and siblings, and determined factors associated with income. METHODS: As part of the Swiss Childhood Cancer Survivor Study (SCCSS), a questionnaire was sent to survivors, aged ≥18 years, registered in the Swiss Childhood Cancer Registry (SCCR), diagnosed at age 4'500 CHF), even after we adjusted for socio-demographic and educational factors (OR = 0.46, p

Population-based studies on childhood cancer survival are key to monitor progress against cancer and to detect potential differences between regions and other subgroups in the population. We investigated time trends and factors associated with childhood cancer survival on a national level in Switzerland, from 1976 to 2013. We extracted data from the population-based Swiss Childhood Cancer Registry of 5,776 children (age 0-14 years) diagnosed with cancer from 1985 to 2014 in Switzerland. We calculated age-adjusted 5-year survival, defined the annual reduction in risk of death (ARR), and explored associations of survival with clinical and demographic factors. Overall, 5-year survival improved significantly, from 64% in 1976-1983 to 88% in 2004-2013. ARR over the whole period was 4% for all diagnostic groups, greatest for Hodgkin lymphomas (8%), ependymomas (6%), Burkitt's lymphomas (6%) and germ cell tumours (6%). Children treated in hospitals without specialised paediatric cancer centre for leukaemia (HR 12.9), lymphoma (HR 5.0) and neuroblastoma (HR 3.7) were at higher risk of death. In French-speaking Switzerland, risk of death was lower for lymphoma (HR 0.6), CNS tumours (HR 0.7) and neuroblastoma (HR 0.5). Children with migration background had a higher risk of death from all tumours except bone tumours. Childhood cancer survival significantly improved from 1976 to 2013, but there is room for further improvement. Survival rates varied by type of clinical treatment, language region and nationality. All paediatric cancer patients should be referred to a specialised paediatric cancer centre. Further research is needed to intervene and completely eliminate inequalities in survival.

Background:Little is known about engagement in multiple health behaviours in childhood cancer survivors.Methods:Using latent class analysis we identified health behaviour patterns in 835 adult survivors of childhood cancer (age 20 35 years) and 1670 age and sex matched controls from the general population. Behaviour groups were determined from replies to questions on smoking drinking cannabis use sporting activities diet sun protection and skin examination.Results:The model identified four health behaviour patterns: 'risk avoidance' with a generally healthy behaviour; 'moderate drinking' with higher levels of sporting activities but moderate alcohol consumption; 'risk taking' engaging in several risk behaviours; and 'smoking' smoking but not drinking. Similar proportions of survivors and controls fell into the 'risk avoiding' (42 vs 44) and the 'risk taking' cluster (14 vs 12) but more survivors were in the 'moderate drinking' (39 vs 28) and fewer in the 'smoking' cluster (5 vs 16). Determinants of health behaviour clusters were gender migration background income and therapy.Conclusion:A comparable proportion of childhood cancer survivors as in the general population engage in multiple health compromising behaviours. Because of increased vulnerability of survivors multiple risk behaviours should be addressed in targeted health interventions.British Journal of Cancer advance online publication 21 June 2012; doi:10.1038/bjc.2012.250 www.bjcancer.com.

BACKGROUND: Healthy lifestyle including sufficient physical activity may mitigate or prevent adverse long-term effects of childhood cancer. We described daily physical activities and sports in childhood cancer survivors and controls, and assessed determinants of both activity patterns. METHODOLOGY/PRINCIPAL FINDINGS: The Swiss Childhood Cancer Survivor Study is a questionnaire survey including all children diagnosed with cancer 1976-2003 at age 0-15 years, registered in the Swiss Childhood Cancer Registry, who survived ≥5 years and reached adulthood (≥20 years). Controls came from the population-based Swiss Health Survey. We compared the two populations and determined risk factors for both outcomes in separate multivariable logistic regression models. The sample included 1058 survivors and 5593 controls (response rates 78% and 66%). Sufficient daily physical activities were reported by 52% (n = 521) of survivors and 37% (n = 2069) of controls (p

Objective: Improved treatment has increased the survival of childhood cancer patients in recent decades, but follow-up care is recommended to detect and treat late effects. We investigated relationships between health beliefs and follow-up attendance in adult childhood cancer survivors. Methods: Childhood cancer survivors aged younger than 16 years when diagnosed between 1976 and 2003, who had survived for more than 5 years and were currently aged 201 years, received a postal questionnaire. We asked survivors whether they attended follow-up in the past year. Concepts from the Health Belief Model (perceived susceptibility and severity of future late effects, potential benefits and barriers to follow-up, general health value and cues toaction) were assessed. Medical information was extracted from the Swiss Childhood Cancer Registry. Results: Of 1075 survivors (response rate 72.3%), 250 (23.3%) still attended regular followup care. In unadjusted analyses, all health belief concepts were significantly associated with follow-up (po0.05). Adjusting for other health beliefs, demographic, and medical variables, only barriers (OR5 0.59; 95%CI: 0.43���0.82) remained significant. Younger survivors, those with lower educational background, diagnosed at an older age, treated with chemotherapy, radiotherapy, or bone marrow transplantation and with a relapse were more likely to attend follow-up care. Conclusions: Our study showed that more survivors at high risk of cancer- and treatmentrelated late effects attend follow-up care in Switzerland. Patient-perceived barriers hinder attendance even after accounting for medical variables. Information about the potential effectiveness and value of follow-up needs to be available to increase the attendance among childhood cancer survivors., + ID der Publikation: unilu_6356 + Sprache: Englisch + Letzte Aktualisierung: 2022-03-21 14:49:24

Life partnerships other than marriage are rarely studied in childhood cancer survivors (CCS). We aimed (1) to describe life partnership and marriage in CCS and compare them to life partnerships in siblings and the general population; and (2) to identify socio-demographic and cancer-related factors associated with life partnership and marriage.As part of the Swiss Childhood Cancer Survivor Study (SCCSS), a questionnaire was sent to all CCS (aged 20-40 years) registered in the Swiss Childhood Cancer Registry (SCCR), aged16 years at diagnosis, who had survived ≥ 5 years. The proportion with life partner or married was compared between CSS and siblings and participants in the Swiss Health Survey (SHS). Multivariable logistic regression was used to identify factors associated with life partnership or marriage.We included 1,096 CCS of the SCCSS, 500 siblings and 5,593 participants of the SHS. Fewer CCS (47%) than siblings (61%, P0.001) had life partners, and fewer CCS were married (16%) than among the SHS population (26%, P0.001). Older (OR = 1.14, P0.001) and female CCS (OR = 1.85,0.001) were more likely to have life partners. CCS who had undergone radiotherapy, bone marrow transplants (global P Treatment = 0.018) or who had a CNS diagnosis (global P Diagnosis0.001) were less likely to have life partners.CCS are less likely to have life partners than their peers. Most CCS with a life partner were not married. Future research should focus on the effect of these disparities on the quality of life of CCS.

Little is known about engagement in multiple health behaviours in childhood cancer survivors.

PURPOSE This is the first study to quantify potential nonresponse bias in a childhood cancer survivor questionnaire survey. We describe early and late responders and nonresponders, and estimate nonresponse bias in a nationwide questionnaire survey of survivors. METHODS In the Swiss Childhood Cancer Survivor Study, we compared characteristics of early responders (who answered an initial questionnaire), late responders (who answered after ≥1 reminder) and nonresponders. Sociodemographic and cancer-related information was available for the whole population from the Swiss Childhood Cancer Registry. We compared observed prevalence of typical outcomes in responders to the expected prevalence in a complete (100% response) representative population we constructed in order to estimate the effect of nonresponse bias. We constructed the complete population using inverse probability of participation weights. RESULTS Of 2328 survivors, 930 returned the initial questionnaire (40%); 671 returned the questionnaire after ≥1reminder (29%). Compared to early and late responders, we found that the 727 nonresponders (31%) were more likely male, aged

Purpose: This is the first study to quantify potential nonresponse bias in a childhood cancer survivor questionnaire survey. We describe early and late responders and nonresponders, and estimate nonresponse bias in a nationwide questionnaire survey of survivors. Methods: In the Swiss Childhood Cancer Survivor Study, we compared characteristics of early responders (who answered an initial questionnaire), late responders (who answered after ≥1 reminder) and nonresponders. Sociodemographic and cancer-related information was available for the whole population from the Swiss Childhood Cancer Registry. We compared observed prevalence of typical outcomes in responders to the expected prevalence in a complete (100% response) representative population we constructed in order to estimate the effect of nonresponse bias. We constructed the complete population using inverse probability of participation weights. Results: Of 2328 survivors, 930 returned the initial questionnaire (40%); 671 returned the questionnaire after ≥1reminder (29%). Compared to early and late responders, we found that the 727 nonresponders (31%) were more likely male, aged

Purpose: This is the first study to quantify potential nonresponse bias in a childhood cancer survivor questionnaire survey. We describe early and late responders and nonresponders, and estimate nonresponse bias in a nationwide questionnaire survey of survivors. Methods: In the Swiss Childhood Cancer Survivor Study, we compared characteristics of early responders (who answered an initial questionnaire), late responders (who answered after ≥1 reminder) and nonresponders. Sociodemographic and cancer-related information was available for the whole population from the Swiss Childhood Cancer Registry. We compared observed prevalence of typical outcomes in responders to the expected prevalence in a complete (100% response) representative population we constructed in order to estimate the effect of nonresponse bias. We constructed the complete population using inverse probability of participation weights. Results: Of 2328 survivors, 930 returned the initial questionnaire (40%); 671 returned the questionnaire after ≥1reminder (29%). Compared to early and late responders, we found that the 727 nonresponders (31%) were more likely male, aged, + ID der Publikation: unilu_20885 + Sprache: Deutsch + Letzte Aktualisierung: 2018-12-28 09:49:48

QUESTIONS UNDER STUDY: Childhood cancer is a rare but severe disease. Therefore central registration of all cases is essential for surveillance and management. This paper describes the methodology and basic results of the Swiss Childhood Cancer Registry (SCCR). METHODS: The SCCR was established in 1976, originally as a national hospital-based registry of childhood malignancies. All 9 paediatric oncology-haematology clinics in Switzerland provide baseline and follow-up information on all children diagnosed with cancer. These data are registered centrally and diagnoses are coded according to the International Classification of Childhood Cancer. RESULTS: From 2001-2005, 887 cases of childhood cancer in Swiss residents under the age of 15 years were registered in the SCCR. Of these, 281 (31.7%) were leukaemias, 223 (24.0%) were CNS tumours, and 116 (13.1%) were lymphomas. The age-standardised annual incidence per 1 Million person-years (age below 15 years; world standardisation) was 154.0 (95% CI 143.7-164.3; N = 887). The incidence was higher for boys (170.2, 155.0-185.4; N = 501) than for girls (136.9, 123.0-150.8; N = 386). CONCLUSION: The close collaboration between all paediatric oncologists-haematologists in Switzerland and a university department allowed the creation of a national population-based cancer registry with detailed clinical information. The SCCR produces cancer type specific incidence and survival estimates and allows the development of nested research projects on childhood cancer aetiology, management and outcome, both on a national and on an international level.