Gisela Michel

Psychological Distress in Adult Survivors of Childhood Cancer: The Swiss Childhood Cancer Survivor Study

PURPOSE To evaluate the degree of psychological distress in adult childhood cancer survivors in Switzerland and to characterize survivors with significant distress. METHODS Childhood cancer survivors who were age younger than 16 years when diagnosed between 1976 and 2003, had survived more than 5 years, and were currently age 20 years or older received a postal questionnaire. Psychological distress was assessed using the Brief Symptom Inventory (BSI). Raw scores were transformed into T scores according to the German norm sample, and the proportion of participants being at increased risk for psychological distress was calculated (case rule: T > or = 63). t tests and univariable and multivariable logistic regressions were used for statistical analyses. RESULTS One thousand seventy-six survivors (63.% of eligible survivors, 71.9% of contacted survivors) returned the questionnaire, 987 with complete data on BSI. Comparison with the norm populations showed lower T scores (T < 50) in the Global Severity Index (GSI; T = 46.2), somatization (T = 47.6), obsessive-compulsive tendencies (T = 46.9), and anxiety (T = 48.4). However, more childhood cancer survivors (especially women) had increased distress for GSI (14.4%), interpersonal sensitivity (16.5%), depression (13.4%), aggression (16.9%), and psychotic tendencies (15.6%) than the expected 10% from the norm population. Caseness was associated with female sex, being a single child, older age at study, and self-reported late effects, especially psychological problems. CONCLUSION Results show that childhood cancer survivors, on average, have less psychological distress than a norm population but that the proportion of survivors at risk for high psychological distress is disproportionally large. Monitoring psychological distress in childhood cancer survivors may be desirable during routine follow-up, and psychological support should be offered as needed.

Incidence of Childhood Cancer in Switzerland: The Swiss Childhood Cancer Registry

This report describes the incidence of childhood cancer in Switzerland, based on the data from the Swiss Childhood Cancer Registry (SCCR), a national hospital‐based cancer registry with very high coverage, founded in 1976 by the Swiss Paediatric Oncology Group (SPOG).

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).

Follow-up care for cancer survivors: views of the younger adult

Background:Since the launch of the National Cancer Survivorship Initiative, there has been a surge of interest surrounding the value and organisation of long-term follow-up care after cancer treatment. We report the views of 309 adult cancer survivors (aged 18–45 years) on provision of follow-up and preferences for care.Methods:A total of 207 survivors completed questionnaires before and after routine consultant-led follow-up appointments and 102 were recruited by post. Measures of health status (including late effects, perceived vulnerability to late effects and quality of life), reasons for attending follow-up (clinical and supportive), issues to be discussed at follow-up and preferences for different models of care were assessed.Results:In all, 59% of the survivors reported experiencing one or more cancer-related health problems. Survivors rated clinical reasons for attending follow-up more highly than supportive reasons (P<0.001), although nutritional advice and counselling were considered useful (60 and 47%, respectively). Those still receiving scheduled follow-up appointments did not discuss the range of issues intended with ‘late effects’ and ‘fertility’, which were particularly under-discussed. Hospital rather than GP follow-up was more highly rated.Conclusion:Survivors value the clinical reassurance currently provided by consultant-led care. However, supportive needs are not systematically addressed. Multi-disciplinary services are recommended to meet supportive needs in addition to clinical care.

Follow-up care for cancer survivors: the views of clinicians

Background:Evidence for the efficacy of late effects surveillance in adult cancer survivors is lacking and there is little agreement among clinicians on appropriate follow-up care.Methods:We report the views of both cancer experts and general practitioners (GPs) on long-term follow-up provision for cancer survivors, focussing on the 18–45 years age group. A total of 421 cancer experts (36% haematologists, 33% oncologists, 18% surgeons, 10% nurses, 2% other) and 54 GPs responded to a structured online survey. Reasons for follow-up care (clinical or supportive); advantages and disadvantages of follow-up in primary care; current practice; and resources required for a quality follow-up service were assessed.Results:Clinicians valued clinical reasons for follow-up more highly than supportive reasons (P<0.001). Learning more about late effects and checking for cancer recurrence were rated as the most important reasons for follow-up by cancer experts and GPs. A total of 85% of cancer specialists hold follow-up consultations alongside patients on active treatment. Cancer experts agreed that primary care follow-up would increase their availability for acute oncological care, but reduce information on late effects. The most important resource to provide a quality follow-up service was specialist nursing support (91%).Conclusions:Follow-up guidelines that include late effects surveillance are needed. Where and who should deliver this care requires further debate.

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.

A parent-completed respiratory questionnaire for 1-year-old children: repeatability

Background and aims: There are few standardised questionnaires for the assessment of respiratory symptoms in preschool children. We have developed and tested the short-term repeatability of a postal questionnaire on respiratory symptoms for 1-year-old children. Methods: A newly developed postal questionnaire for the assessment of wheeze and other respiratory symptoms was sent to parents of a population-based random sample of 4300 children aged 12–24 months. After an interval of 3 months, a random sample of 800 respondents received the questionnaire a second time. The responses were compared using Cohen’s kappa (&kgr;) to assess agreement corrected for chance. Results: The first questionnaire was returned by 3194 (74%) families, the second one by 460/800 (58%). Repeatability was excellent (&kgr; 0.80–0.96) for questions on household characteristics, environmental exposures and family history, good (&kgr; 0.61–0.80) for questions on prevalence, severity and treatment of wheeze, and moderate (&kgr; 0.39–0.66) for chronic cough and upper respiratory symptoms. Conclusions: This short postal questionnaire designed for use in population-based studies has excellent repeatability for family and household characteristics and good repeatability for questions on wheeze. Short-term changes in symptom status might be responsible for variable answers on recent chronic cough and upper respiratory symptoms. Overall, the questionnaire is a valuable instrument for community-based research on respiratory symptoms in 1 to 2-year-old children.

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.

Follow-up care after childhood cancer: Survivors' expectations and preferences for care

AIMS To describe (1) self-rated quality of life, late effects and perceived future vulnerability, (2) expectations before a follow-up appointment, subsequent satisfaction and preferences for different models of care and (3) differences between survivors in quality of life, perceived late effects, vulnerability, expectations regarding follow-up, information needs (topics they want to and did discuss) and preferences for different models of care depending on risk stratification among childhood cancer survivors. METHOD One hundred and twelve of 141 survivors (18-45 years), diagnosed before 16 years and >5 years since diagnosis completed questionnaires before and after a follow-up appointment (or an abridged questionnaire if they did not attend an appointment within the study period). We collected data on physical (physical component score [PCS]) and mental (mental component score [MCS]) quality of life, late effects, future vulnerability and expectations about care (clinical: identification of late effects; supportive: employment, relationships). Medical information was extracted from case notes. RESULTS MCS and PCS were comparable to population norms, but 55.5% of survivors reported > or =1 late effect (range 1-9). Clinical care was rated more highly than supportive care (p<0.001) especially in those with worse PCS (p=0.042). Supportive care was rated highly by survivors who reported more late effects (p=0.040), higher future vulnerability (p<0.001) and lower MCS (p=0.005), and by women (p=0.014). Regardless of risk stratification, consultant-led follow-up was valued higher than other models (nurse-led care, GP-led care or postal/telephone follow-up, p<0.001). CONCLUSION Childhood cancer survivors are in favour of sustaining long-term follow-up care within the existing consultant-led model but this is not feasible given the increasing number of survivors. In the future we therefore need to develop alternative services which will provide the best medical care for each survivors needs.

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).