Corina S. Rueegg

Cohort Profile: The Swiss Childhood Cancer Survivor Study

Thanks to continuous improvements in therapy, 5-year survival of childhood cancer in developed countries now exceeds 80%, leading to a growing population of long-term survivors. As the cancer and treatment can cause adverse effects long after the illness has been cured, assessment of long-term quality of life (QOL), somatic, psychological and social outcomes become increasingly important. Although cancer in children is rare, the population impact of late toxicities on disability-adjusted life years is considerable because of the young age at diagnosis. Up to now, many single-centre studies or clinical trials have been published, but only few large representative long-term follow-up studies exist, including the Childhood Cancer Survivor Studies in the USA (CCSS), Canada and Great Britain (BCCSS). These studies found increased risks of second malignant neoplasms (SMNs), mortality and chronic medical problems such as endocrine dysfunctions, cardiovascular problems, stroke or infertility. Psychosocial problems such as depression, anxiety and post-traumatic symptoms have also been reported. Life-long medical follow-up is thus recommended for high-risk patients. For these reasons, we created a national cohort study of all survivors of childhood and adolescent cancer in Switzerland, the Swiss Childhood Cancer Survivor Study (SCCSS).

Educational achievement in Swiss childhood cancer survivors compared with the general population

The objective of this study was to describe educational achievements of childhood cancer survivors in Switzerland compared with the general population. In particular, the authors investigated educational problems during childhood, final educational achievement in adulthood, and its predictors.

Life partnerships in childhood cancer survivors, their siblings, and the general population.

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.

Information provision and information needs in adult survivors of childhood cancer

Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have received on disease, treatment, follow‐up, and late effects; (2) their information needs in these four domains and the format in which they would like it provided; (3) the association with psychological distress and quality of life (QoL).

Alcohol consumption and binge drinking in young adult childhood cancer survivors.

This study compared frequency of alcohol consumption and binge drinking between young adult childhood cancer survivors and the general population in Switzerland, and assessed its socio‐demographic and clinical determinants.

Adolescent survivors of childhood cancer: are they vulnerable for psychological distress?†

We aimed to (i) evaluate psychological distress in adolescent survivors of childhood cancer and compare them to siblings and a norm population; (ii) compare the severity of distress of distressed survivors and siblings with that of psychotherapy patients; and (iii) determine risk factors for psychological distress in survivors.

Physical Performance Limitations in Adolescent and Adult Survivors of Childhood Cancer and Their Siblings

Purpose This study investigates physical performance limitations for sports and daily activities in recently diagnosed childhood cancer survivors and siblings. Methods The Swiss Childhood Cancer Survivor Study sent a questionnaire to all survivors (≥16 years) registered in the Swiss Childhood Cancer Registry, who survived >5 years and were diagnosed 1976–2003 aged <16 years. Siblings received similar questionnaires. We assessed two types of physical performance limitations: 1) limitations in sports; 2) limitations in daily activities (using SF-36 physical function score). We compared results between survivors diagnosed before and after 1990 and determined predictors for both types of limitations by multivariable logistic regression. Results The sample included 1038 survivors and 534 siblings. Overall, 96 survivors (9.5%) and 7 siblings (1.1%) reported a limitation in sports (Odds ratio 5.5, 95%CI 2.9-10.4, p<0.001), mainly caused by musculoskeletal and neurological problems. Findings were even more pronounced for children diagnosed more recently (OR 4.8, CI 2.4–9.6 and 8.3, CI 3.7–18.8 for those diagnosed <1990 and ≥1990, respectively; p = 0.025). Mean physical function score for limitations in daily activities was 49.6 (CI 48.9–50.4) in survivors and 53.1 (CI 52.5–53.7) in siblings (p<0.001). Again, differences tended to be larger in children diagnosed more recently. Survivors of bone tumors, CNS tumors and retinoblastoma and children treated with radiotherapy were most strongly affected. Conclusion Survivors of childhood cancer, even those diagnosed recently and treated with modern protocols, remain at high risk for physical performance limitations. Treatment and follow-up care should include tailored interventions to mitigate these late effects in high-risk patients.

Information needs in parents of long-term childhood cancer survivors.

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.

Clustering of health behaviours in adult survivors of childhood cancer and the general population.

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.

Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia.

Background Relapses occur in about 20% of children with acute lymphoblastic leukemia (ALL). Approximately one-third of these children can be cured. Their risk for late effects is high because of intensified treatment, but their health-related quality of life (HRQOL) was largely unmeasured. Our aim was to compare HRQOL of ALL survivors with the general population, and of relapsed with non-relapsed ALL survivors. Methodology/Principal Findings As part of the Swiss Childhood Cancer Survivor Study (SCCSS) we sent a questionnaire to all ALL survivors in Switzerland who had been diagnosed between 1976–2003 at age <16 years, survived ≥5 years, and were currently aged ≥16 years. HRQOL was assessed with the Short Form-36 (SF-36), which measures four aspects of physical health and four aspects of mental health. A score of 50 corresponded to the mean of a healthy reference population. We analyzed data from 457 ALL survivors (response: 79%). Sixty-one survivors had suffered a relapse. Compared to the general population, ALL survivors reported similar or higher HRQOL scores on all scales. Survivors with a relapse scored lower in general health perceptions (51.6) compared to those without (55.8;p=0.005), but after adjusting for self-reported late effects, this difference disappeared. Conclusion/Significance Compared to population norms, ALL survivors reported good HRQOL, even after a relapse. However, relapsed ALL survivors reported poorer general health than non-relapsed. Therefore, we encourage specialists to screen for poor general health in survivors after a relapse and, when appropriate, specifically seek and treat underlying late effects. This will help to improve patients’ HRQOL.