Janine Vetsch

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.

Screening for psychological late effects in childhood, adolescent and young adult cancer survivors: a systematic review.

Purpose of review In the past years, increasing evidence showed that many childhood cancer survivors suffer from psychological distress long after treatment ended. However, psychosocial issues are often neglected during follow-up care. Including screening for psychological distress before follow-up appointments might help addressing the topic in survivors who need support. Our aim was to systematically review the available evidence on screening for psychological distress in childhood cancer survivors. Recent findings We found eight studies that investigated different screening tools for their utility in detecting psychological distress in childhood cancer survivors. The Brief Symptom Inventory-18 with an adapted cutoff score for childhood cancer survivors, and the newly developed short form of the Beck Depression Index were both shown to be of a potential benefit as brief screening tools in follow-up care. Summary We identified promising screening tools to be used to detect psychological distress in childhood cancer survivors. However, there is still a lack of studies addressing applicability and effectiveness when screening is routinely implemented into follow-up care. To improve quality of follow-up care, and identify and treat survivors with psychological distress, screening tools should now be implemented and their adequacy further tested in day-to-day clinic life.

Employment Situation of Parents of Long-Term Childhood Cancer Survivors

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.

Health-related quality of life of children on treatment for acute lymphoblastic leukemia: A systematic review

Children with acute lymphoblastic leukemia (ALL) undergo intense anticancer treatment. We systematically reviewed 22 studies evaluating 2,073 ALL patients’ health‐related quality of life (HRQL) and its clinical/demographic correlates during treatment. Overall HRQL was significantly reduced on treatment. Despite HRQL improvements over time, longitudinal studies reported a proportion of children continued to experience reduced HRQL after treatment completion. We found inconsistent associations between clinical/demographic factors and HRQL outcomes. Tentative evidence emerged for worse HRQL being associated with intensive phases of chemotherapy, corticosteroid therapy, experiencing greater toxicity, older age, and female sex. Longitudinal studies are needed to identify children at‐risk of reduced HRQL.

Health-related quality of life of survivors of childhood acute lymphoblastic leukemia: a systematic review

PurposeAcute lymphoblastic leukemia (ALL) survivors are the largest group of childhood cancer survivors; however, their risk for late effects is high. Cancer-related late effects have the potential to compromise health-related quality of life (HRQL) long into survivorship. None of the reviews so far have focused on ALL solely, but described HRQL for all childhood cancers. We aimed to identify ALL survivors at risk for poor HRQL and identify possible risk factors.MethodFollowing PRISMA guidelines, we performed a systematic review, searching published literature in Pubmed, PsycInfo, Embase, and the Cochrane database including all publications up to December 16, 2016. Two independent reviewers (JV and ER) screened eligible articles and assessed article quality.ResultsWe found 31 studies representing 4356 survivors and 901 proxies. Thirteen studies found worse, eight found no difference, and three better, overall HRQL scores compared with healthy controls or norms. ALL survivors typically had better overall HRQL scores than survivors of other childhood cancers. Clinical variables (e.g., treatment received) were not consistently associated with HRQL; however, experiencing worse late effects was associated with lower HRQL. Survivor and parent socio-demographic factors and psychological factors such as resilience and depression were also associated with HRQL.ConclusionALL survivors appeared to have worse or equivalent HRQL compared with controls, but better HRQL than survivors of other cancer types. However, studies reported a wide variability in HRQL and potential risk factors for poor HRQL. Measuring ALL survivors’ HRQL longitudinally and comprehensively assessing potential risk factors might identify future avenues to intervene early.

Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls.

QUESTIONS UNDER STUDY Teenage and young adult (TYA) cancer patients are faced with the diagnosis during a challenging period of psychosocial development that may affect social outcomes in the long term. Therefore, we aimed to: (1) determine differences in social outcomes between long-term TYA cancer survivors and healthy controls and (2) identify factors associated with adverse social outcomes. METHODS We sent a questionnaire to TYA cancer survivors (aged 16-25 years at diagnosis, 5 years after diagnosis) registered in the Cancer Registry Zurich and Zug. Information on controls was obtained from the Swiss Health Survey 2012. We assessed educational achievement, employment status, marital status and life partnership (survivors only), and compared these outcomes between survivors and controls. We used logistic regression to identify sociodemographic and cancer-related factors associated with social outcomes. RESULTS We included 160 TYA cancer survivors and 999 controls. Educational achievement of survivors differed significantly from controls (p = 0.012): more survivors than controls reported upper secondary education (33 vs 27%) and fewer survivors reported university education (12 vs 21%). No significant differences were found for employment (p = 0.515) and marital status (p = 0.357). The majority of survivors (91%) and controls (90%) were employed, and 37% of survivors were married, compared with 41% of controls. There were no cancer-related factors associated with having only basic education. Unemployment was associated with younger age at diagnosis (odds ratio [OR] 5.3, 95% confidence interval [CI] 1.3-30.8) and self-reported late effects (OR 4.7, 95% CI 1.3-19.5). Survivors of younger age at diagnosis were more likely not to be married (OR 2.7, 95% CI 1.3-5.7) and not to have a life partner (OR 2.3, 95% CI 1.0-5.2). CONCLUSIONS Our findings indicate that TYA cancer survivors completed applied higher education rather than a university education. Future studies including larger samples of TYA cancer survivors are needed to validate our findings and to explore the reasons for and satisfaction with the observed educational pathway.

Children and young people's understanding of inherited conditions and their attitudes towards genetic testing: A systematic review

Children and young people are increasingly likely to receive information regarding inherited health risks relevant to their genetic relatives and themselves. We reviewed the literature to determine what children and young people (21 years and younger) understand about inherited conditions and their attitudes towards genetic testing. We screened 1815 abstracts to identify 20 studies representing the perspectives of 1811 children and young people between the ages of 6 and 21 years (1498 children or young people at general population‐level risk from 9 studies, 313 affected/at risk from 15 studies). Children and young people at general population‐level risk demonstrated a basic understanding that disease predisposition can be inherited within families. Those affected by or at risk of genetic conditions inferred their genetic status from observable, relational characteristics within their family and the results of personal genetic testing if it had occurred, but some misunderstandings of important genetic concepts were evident. Children and young people expressed interest in and a willingness to undertake personal genetic testing, but also articulated concerns about the limitations and risks of testing. Paediatric patients require developmentally‐sensitive genetic counselling and support in navigating the unique landscape of their condition.