Late Adverse Effects after Treatment for Childhood Acute Leukemia.

The aim of this review is to raise awareness and knowledge among healthcare professionals and policymakers about late adverse effects in survivors of childhood leukemia. With contemporary treatment, over 90% of children with acute lymphoblastic leukemia (ALL) and over 60% with acute myeloid leukemia (AML) are cured. Large cohort studies demonstrate that 20% of ALL and most AML survivors have at least one chronic health condition by 20-25 years after diagnosis. These are life-changing or threatening in some survivors and contribute to increased premature mortality. We describe the frequency, causes, clinical features, and natural history of the most frequent and severe late adverse effects in childhood leukemia survivors, including subsequent malignant neoplasms, metabolic toxicity, gonadotoxicity and impaired fertility, endocrinopathy and growth disturbances, bone toxicity, central and peripheral neurotoxicity, cardiotoxicity, psychosocial late effects, accelerated ageing and late mortality. The wide range of late effects in survivors of haemopoietic stem cell transplant is highlighted. Recent developments informing the approach to long-term survivorship care are discussed, including electronic personalized patient-specific treatment summaries and care plans such as the Survivor Passport (SurPass), surveillance guidelines and models of care. The importance of ongoing vigilance is stressed given the increasing use of novel targeted drugs with limited experience of long-term outcomes. CONCLUSION: It is vital to raise awareness of the existence and severity of late effects of childhood leukemia therapy among parents, patients, health professionals, and policymakers. Structured long-term surveillance recommendations are necessary to standardize follow-up care.

Characteristics and feedback of adult survivors of childhood cancer seen in Swiss comprehensive follow-up clinics led by general internists: a prospective cohort study.

OBJECTIVES: In our study, we aimed to characterise adult childhood cancer survivors (ACCS), assess their health issues, gauge health-related quality of life (HRQOL) and evaluate visit satisfaction. DESIGN: Prospective cohort study using data from clinical visits and questionnaires. SETTING: Interdisciplinary follow-up programme for ACCS based on the long-term follow-up (LTFU) guidelines of the Children's Oncology Group and overseen by internists in two Swiss hospitals. PARTICIPANTS: ACCS attending our LTFU clinics between April 2017 and January 2022 were eligible. INTERVENTIONS: We documented medical history, current health status and assessed HRQOL using Short Form-36 V.2, comparing it with Swiss general population (SGP) norms (T mean=50, SD=10; age stratified). 3 months post visit, a feedback questionnaire was distributed. MAIN RESULTS: Among 102 ACCS (mean age: 32 years (range: 18-62 years), 68% women), 43 had no prior follow-up (36 ACCS>28 years, 7 ACCS≤28 years). A notable 94% had health issues, affecting an average of 6.1 (SD=3.3) organ systems. HRQOL was lower in ACCS>28 years than the SGP>28 years (physical: 44.8 (SD=11.65) vs 49.3 (SD=10.29), p=0.016; mental: 44.4 (SD=13.78) vs 50.53 (SD=9.92), p=0.004). Older ACCS (>28 years) reported inferior physical (44.8 vs 50.1 (SD=9.30), p=0.017) and mental HRQOL (44.4 vs 50.3 (SD=7.20), p=0.009) than younger ACCS. The majority of respondents reported high levels of satisfaction with the consultation, exceeding 90%. CONCLUSION: ACCS attending LTFU clinics face diverse health issues impacting multiple organ systems and exhibit lower HRQOL compared with the SGP. Thus, internist-led LTFU clinics are crucial for optimising follow-up care.

The Brief Symptom Inventory in the Swiss general population: Presentation of norm scores and predictors of psychological distress.

Psychological distress is an important and frequent health problem. The Brief Symptom Inventory (BSI) allows screening for psychological distress in clinical, general and research populations. We aimed to provide normative data for the BSI and the BSI-18 for the Swiss general population: We 1) present psychometric properties, 2) develop a Swiss T-standardization and validate it using a clinical sample, 3) describe psychological distress in the Swiss general population and the clinical sample, and 4) compare the means and T-standardized scores of the Swiss general population to different German norm populations. Using a cross-sectional study design, we invited a representative sample of the Swiss general population aged 18-75 years to the study. A sample of psychotherapy outpatients had competed the BSI before start of their therapy. We calculated scores for the nine scales of the BSI (three of them constitute the BSI-18), the T-standardization and the following BSI indices: Global Severity Index (GSI), Positive Symptom Total (PST), Positive Symptom Distress Index (PSDI), and Caseness (reaching T≥63 on the GSI or T≥63 on at least two of the scales). A total of 1238 general population participants completed the BSI (41.8% male; mean age 48.9 years). The BSI had good psychometric properties. The Swiss T-standardization showed good validity when applied in the clinical sample. Females reached a significantly higher GSI score than males (p<0.001). Older participants (p = 0.026), those with higher education (p <0.001), and those employed or retired (p<0.001) reached lower scores than participants aged 18-25 years, those with compulsory schooling, and unemployed participants, respectively. A total of 18.1% (CI: 16.0-20.5) participants of the general population and 75.2% (CI: 73.7-76.7) of the psychotherapy patients were considered cases with psychological distress. Our study presents detailed normative data for the BSI and the BSI-18 based on a representative sample of the Swiss general population. This information will be helpful for clinical applications and research in the Swiss and international context.

Socioeconomic Status and Adherence to Preventive Measures During the COVID-19 Pandemic in Switzerland: A Population Based Digital Cohort Analysis.

Objectives: To assess the association between socioeconomic status (SES) and self-reported adherence to preventive measures in Switzerland during the COVID-19 pandemic. Methods: 4,299 participants from a digital cohort were followed between September 2020 and November 2021. Baseline equivalised disposable income and education were used as SES proxies. Adherence was assessed over time. We investigated the association between SES and adherence using multivariable mixed logistic regression, stratifying by age (below/above 65 years) and two periods (before/after June 2021, to account for changes in vaccine coverage and epidemiological situation). Results: Adherence was high across all SES strata before June 2021. After, participants with higher equivalised disposable income were less likely to adhere to preventive measures compared to participants in the first (low) quartile [second (Adj.OR, 95% CI) (0.56, 0.37-0.85), third (0.38, 0.23-0.64), fourth (0.60, 0.36-0.98)]. We observed similar results for education. Conclusion: No differences by SES were found during the period with high SARS-CoV-2 incidence rates and stringent measures. Following the broad availability of vaccines, lower incidence, and eased measures, differences by SES started to emerge. Our study highlights the need for contextual interpretation when assessing SES impact on adherence to preventive measures.

Longitudinal changes of psychological distress among childhood cancer survivors: The Swiss Childhood Cancer Survivor Study.

BACKGROUND: Childhood cancer survivors may experience psychological distress due to the disease, cancer treatments, and potential late effects. Limited knowledge exists regarding longitudinal changes in psychological distress after childhood cancer. We aimed to determine changes in psychological distress over time and explore determinants of changes. METHODS: The Swiss Childhood Cancer Survivor Study collected data at baseline (2007-2009) and follow-up (2010-2012). Psychological distress was measured using the Brief Symptom Inventory 18 (BSI-18), including three symptom scales (somatization, depression, anxiety) and an overall distress index (Global Severity Index, GSI). Sum-scores were T-standardized (mean = 50; standard deviation [SD] = 10). Survivors with a score ≥57 on the GSI or two symptom scales were classified as cases with distress. We used linear mixed effects regression to identify potential sociodemographic and clinical determinants of change in psychological distress. RESULTS: We analyzed 696 survivors at baseline (mean age = 24 years [SD = 4], 49% females, mean time since diagnosis = 16 years [SD = 4]). On follow-up (2.4 years, SD = 1), 317 survivors were analyzed, including 302 participants with repeated measures. We found that 13% (39/302) were cases at baseline, and 25% (76/302) were cases on follow-up. Those older at study and longer since diagnosis, females, diagnosed with central nervous system (CNS) tumors, and those reporting late effects were more likely to experience higher levels of distress. Females and unemployed are at higher risk for developing or persisting psychological distress than males and those who are employed or in training. CONCLUSION: We observed an increase in psychological distress score over time, with higher proportion of psychological distress on follow-up. Anticipatory guidance and screening should be implemented in regular follow-up care.

The information needs of relatives of childhood cancer patients and survivors: A systematic review of quantitative evidence.

OBJECTIVE: We aimed to: (1) summarize the quantitative evidence on the information needs of relatives of childhood cancer patients, survivors, and children deceased from cancer; and (2) identify factors associated with these needs. METHODS: PubMed, PsycINFO, Scopus, and CINAHL were systematically searched. The methodological quality of all included publications was assessed, and the extracted data were analyzed using narrative synthesis. RESULTS: Of 5810 identified articles, 45 were included. Information needs were classified as unmet, met (satisfied), and unspecified and categorized into five domains: medical information, cancer-related consequences, lifestyle, family, and support. Most unmet information needs concerned cancer-related consequences (e.g., late effects), while information needs on support were generally met. Migrant background and higher education were associated with higher information needs among parents. Siblings had lower information needs than parents. CONCLUSION: This systematic review provides a comprehensive overview of the information needs of relatives in the context of childhood cancer, showing that information on cancer-related consequences is needed most often. The socioeconomic background of the relatives needs continued consideration throughout the cancer trajectory. PRACTICE IMPLICATIONS: Our findings suggest the need for personalized information. Healthcare professionals should adapt their communication strategies to respond to the different and evolving needs of all affected relatives.

Incidence and prevalence of musculoskeletal health conditions in survivors of childhood and adolescent cancers: A report from the Swiss childhood cancer survivor study.

PURPOSE: Childhood cancer and its treatment can cause damage to the musculoskeletal system. We aimed to determine the incidence and prevalence of musculoskeletal health conditions (MSHC) in survivors, and to investigate differences by cancer-related characteristics. METHODS: We used data from the Childhood Cancer Registry and the Swiss Childhood Cancer Survivor Study, including survivors (≥5 years since diagnosis; diagnosed 1976-2015 at <20 years of age) aged ≥15 years at study. Cumulative incidence and prevalence of MSHCs (osteoporosis, limb length discrepancy, limited joint mobility, bone/joint pain, scoliosis, changes to chest/ribs and amputation) were calculated from self-reported data. RESULTS: We included 2645 survivors (53% men; median age 24 years, range 15-59 years). Prevalence and cumulative incidence of any MSHC was 21% and 26%, respectively. Incidence rate for any MSHC was 15.6/1000 person-years. Scoliosis (8%), bone/joint pain (7%) and limited joint mobility (7%) were the most prevalent MSHC. MSHC co-occurred with other health conditions in 87% of survivors. We found increased rates of MSHC in women (RR = 1.4, 95%CI: 1.2-1.7), bone tumour survivors (RR = 6.0, 95%CI: 4.5-7.9), survivors older at diagnosis (11-15 years: RR = 1.8, 95%CI: 1.5-2.3), after a relapse (RR = 1.5, 95%CI: 1.3-1.9), treatment with surgery (RR = 1.2, 95%CI: 1.0-1.5), chemotherapy (RR = 1.4, 95%CI: 1.1-1.8) or stem cell transplantation (RR = 1.6, 95%CI: 1.0-2.5), and more recent year of diagnosis (2011-2015: RR = 4.3, 95%CI: 2.8-6.8). CONCLUSION: MSHCs are prevalent in survivors, the risk is increasing in younger survivor cohorts, and MSHCs usually occur in multimorbid survivors. Strengthening of rehabilitation services and appropriate referrals are needed to mitigate the effects of the cancer and cancer treatment.

Unhealthy lifestyle behaviors, overweight, and obesity among childhood cancer survivors in the Netherlands: A DCCSS LATER study.

BACKGROUND: The objective of this study was to examine the prevalence of unhealthy lifestyle behaviors, overweight, and obesity in Dutch childhood cancer survivors (CCSs) compared with sibling controls and the Dutch general population. Other aims were to assess associated factors of unhealthy lifestyle behaviors, overweight, and obesity and to identify subgroups of CCSs at risk for these unhealthy statuses. METHODS: The authors included 2253 CCSs and 906 siblings from the Dutch Childhood Cancer Survivor Study-Late Effects After Childhood Cancer cohort, part 1, and added data from the Dutch general population. Questionnaire data were collected on overweight and obesity (body mass index >25.0 kg/m2), meeting physical activity guidelines (>150 minutes per week of moderate or vigorous exercises), excessive alcohol consumption (>14 and >21 alcoholic consumptions per week for women and men, respectively), daily smoking, and monthly drug use. Multivariable logistic regression analyses and two-step cluster analyses were performed to examine sociodemographic-related, health-related, cancer-related, and treatment-related associated factors of unhealthy lifestyle behaviors and to identify subgroups of CCSs at risk for multiple unhealthy behaviors. RESULTS: CCSs more often did not meet physical activity guidelines than their siblings (30.0% vs. 19.3%; p < .001). Married as marital status, lower education level, nonstudent status, and comorbidities were common associated factors for a body mass index ≥25.0 kg/m2 and insufficient physical activity, whereas male sex and lower education were shared associated factors for excessive alcohol consumption, daily smoking, and monthly drug use. A subgroup of CCSs was identified as excessive alcohol consumers, daily smokers, and monthly drug users. CONCLUSIONS: The current results emphasize the factors associated with unhealthy behaviors and the potential identification of CCSs who exhibit multiple unhealthy lifestyle behaviors.

Validation of self-reported cardiovascular problems in childhood cancer survivors by contacting general practitioners: feasibility and results.

BACKGROUND: Epidemiological studies often rely on self-reported health problems and validation greatly improves study quality. In a study of late effects after childhood cancer, we validated self-reported cardiovascular problems by contacting general practitioners (GPs). This paper describes: (a) the feasibility of this approach; and (b) the agreement between survivor-reports and reports from their GP. METHODS: The Swiss Childhood Cancer Survivor Study (SCCSS) contacts all childhood cancer survivors registered in the Swiss Childhood Cancer Registry since 1976 who survived at least 5 years from cancer diagnosis. We validated answers of all survivors who reported a cardiovascular problem in the questionnaire. Reported cardiovascular problems were hypertension, arrhythmia, congestive heart failure, myocardial infarction, angina pectoris, stroke, thrombosis, and valvular problems. In the questionnaire, we further asked survivors to provide a valid address of their GP and a consent for contact. We sent case-report forms to survivors' GPs and requested information on cardiovascular diagnoses of their patients. To determine agreement between information reported by survivors and GPs, we calculated Cohen's kappa (κ) coefficients for each category of cardiovascular problems. RESULTS: We used questionnaires from 2172 respondents of the SCCSS. Of 290 survivors (13% of 2172) who reported cardiovascular problems, 166 gave consent to contact their GP and provided a valid address. Of those, 135 GPs (81%) replied, and 128 returned the completed case-report form. Survivor-reports were confirmed by 54/128 GPs (42%). Of the 54 GPs, 36 (28% of 128) confirmed the problems as reported by the survivors; 11 (9% of 128) confirmed the reported problem(s) and gave additional information on more cardiovascular outcomes; and seven GPs (5% of 128) confirmed some, but not all cardiovascular problems. Agreement between GPs and survivors was good for stroke (κ = 0.79), moderate for hypertension (κ = 0.51), arrhythmias (κ = 0.41), valvular problems (κ = 0.41) and thrombosis (κ = 0.56), and poor for coronary heart disease (κ = 0.15) and heart failure (κ = 0.32). CONCLUSIONS: Despite excellent GP compliance, it was found unfeasible to validate self-reported cardiovascular problems via GPs because they do not serve as gatekeepers in the Swiss health care system. It is thus necessary to develop other validation methods to improve the quality of patient-reported outcomes.

Exploring grandparents' psychosocial responses to childhood cancer: A qualitative study.

OBJECTIVE: A childhood cancer diagnosis is a traumatic experience for patients and their families. However, little is known about the effect on grandparents. We aimed to investigate the negative psychosocial impact, coping strategies, and positive outcomes of grandparents of childhood cancer patients in Switzerland. METHODS: We collected data using a semi-structured interview guide and applied qualitative content analysis. RESULTS: We conducted 20 interviews with 23 grandparents (57% female; mean age = 66.9 years; SD = 6.4; range = 57.0-82.4) of 13 affected children (69% female; mean age = 7.5 years; SD = 6.1; range = 1.0-18.9) between January 2022 and April 2023. The mean time since diagnosis was 1.0 years (SD = 0.5; range = 0.4-1.9). Grandparents were in shock and experienced strong feelings of fear and helplessness. They were particularly afraid of a relapse or late effects. The worst part for most was seeing their grandchild suffer. Many stated that their fear was always present which could lead to tension and sleep problems. To cope with these negative experiences, the grandparents used internal and external strategies, such as accepting the illness or talking to their spouse and friends. Some grandparents also reported positive outcomes, such as getting emotionally closer to family members and appreciating things that had previously been taken for granted. CONCLUSIONS: Grandparents suffer greatly when their grandchild is diagnosed with cancer. Encouragingly, most grandparents also reported coping strategies and positive outcomes despite the challenges. Promoting coping strategies and providing appropriate resources could reduce the psychological burden of grandparents and strengthen the whole family system.

Grief and Bereavement Support for Parents in Low- or Middle-Income Countries: A Systematic Review.

INTRODUCTION: The death of a child may be the most traumatic event a family can experience. Bereavement care for parents is essential for their physical and mental well-being and is a psychosocial standard of care. Childhood mortality is higher in low- or middle-income countries (LMICs); however, little is known regarding bereavement support or interventions for parents in LMICs. AIM: To identify programs, services, initiatives, or interventions offered to bereaved parents in LMICs in hospital settings. METHODS: A systematic search was executed following the Preferred Reported Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles from LMICs describing interventions, programs, or resources provided to parents after the death of a child (0-18 years old) from any cause were included. Extracted data was categorized by demographics, study design, outcomes, and quality assessment using the McGill Mixed Methods Appraisal Tool (MMAT). RESULTS: We retrieved 4428 papers and screened their titles and abstracts, 36 articles were selected for full-text assessment, resulting in nine articles included in the final analysis. Most interventions described support for parents whose child died during the prenatal or neonatal period. The primary interventions included psychological counseling, creating mementos (such as photographs or footprints), and bereavement workshops. Only one paper described a fully established bereavement program for parents. Eight of the papers met high-quality criteria. DISCUSSION: Although bereavement care is crucial for parents whose child has died, only a few studies have documented bereavement interventions in LMICs. More research may help with bereavement program implementation and improved care for bereaved parents in LMICs.

Risk of subsequent gliomas and meningiomas among 69,460 5-year survivors of childhood and adolescent cancer in Europe: the PanCareSurFup study.

BACKGROUND: Childhood cancer survivors are at risk of subsequent gliomas and meningiomas, but the risks beyond age 40 years are uncertain. We quantified these risks in the largest ever cohort. METHODS: Using data from 69,460 5-year childhood cancer survivors (diagnosed 1940-2008), across Europe, standardized incidence ratios (SIRs) and cumulative incidence were calculated. RESULTS: In total, 279 glioma and 761 meningioma were identified. CNS tumour (SIR: 16.2, 95% CI: 13.7, 19.2) and leukaemia (SIR: 11.2, 95% CI: 8.8, 14.2) survivors were at greatest risk of glioma. The SIR for CNS tumour survivors was still 4.3-fold after age 50 (95% CI: 1.9, 9.6), and for leukaemia survivors still 10.2-fold after age 40 (95% CI: 4.9, 21.4). Following cranial radiotherapy (CRT), the cumulative incidence of a glioma in CNS tumour survivors was 2.7%, 3.7% and 5.0% by ages 40, 50 and 60, respectively, whilst for leukaemia this was 1.2% and 1.7% by ages 40 and 50. The cumulative incidence of a meningioma after CRT in CNS tumour survivors doubled from 5.9% to 12.5% between ages 40 and 60, and in leukaemia survivors increased from 5.8% to 10.2% between ages 40 and 50. DISCUSSION: Clinicians following up survivors should be aware that the substantial risks of meningioma and glioma following CRT are sustained beyond age 40 and be vigilant for symptoms.

Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents.

OBJECTIVE: Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS: CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS: In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.

Reciprocal association between social support and psychological distress in chronic physical health conditions: A random intercept cross-lagged panel model.

The onset of a chronic physical health condition (CHC) can highly impact individuals' well-being and mental health. Social support has been shown to help people rebound after the onset of a CHC. Nonetheless, little is known about the longitudinal pattern of social support and its reciprocal association with mental health in CHC. This study aimed to illustrate the longitudinal pattern of perceived social support and to examine the reciprocal association between perceived social support and psychological distress across 6 years. Two random intercept cross-lagged panel models were conducted, one for emotional and one for practical support, using yearly assessments of 582 Swiss Household Panel's participants reporting a CHC. A reciprocal association was found, with psychological distress 1 year after the onset being linked to less emotional support in the following year and vice versa, more emotional support being linked to less psychological distress the following year. A unidirectional association was found for practical support, with more psychological distress 1 year before the CHC onset being linked to more practical support at the onset year. This study underlines the importance of involving the social environment of individuals living with a CHC, especially around the first year after the onset.

Understanding caregivers' decision to vaccinate childhood cancer survivors against COVID-19.

BACKGROUND: Vaccination against COVID-19 is recommended for childhood cancer survivors (CCS). This study aimed to identify antecedents contributing to caregivers' decisions to vaccinate CCS aged 5-17 years against COVID-19 by applying the Theory of Planned Behavior. METHODS: Participants in this cross-sectional study completed an online survey assessing caregiver attitudes, subjective norms, perceived behavioral control, intention to vaccinate CCS, CCS vaccination status, COVID-19 health literacy, and frequency of COVID-19 information-seeking. Surveys were completed between May and June 2022 following approval for the emergency use of COVID-19 vaccines among children aged ≥5 years in the U.S. Data were analyzed using unadjusted linear regressions and structural equation modeling. RESULTS: Participants were caregivers (n = 160, 87.5% biological mothers, 75.6% white/non-Hispanic) of CCS (n = 160, 44.4% female, mean (M) = 12.5 years old, M = 8.0 years off treatment). 70.0% (n = 112) of caregivers and 53.8% (n = 86) of CCS received a COVID-19 vaccine. Over one-third (37.5%) of caregivers reported disagreement or indecision about future COVID-19 vaccination for the CCS. Caregivers' intention (ß = 0.962; standard error [S.E.] = 0.028; p < 0.001) was highly related to CCS vaccination status. Attitudes (ß = 0.568; S.E. = 0.078; p < 0.001) and subjective norms (ß = 0.322; S.E. = 0.062; p < 0.001) were associated with intention. Higher frequency of COVID-19 information-seeking (ß = 0.313; S.E. = 0.063; p < 0.001) and COVID-19 health literacy (ß = 0.234; S.E. = 0.059; p < 0.001) had a positive indirect effect on intention through attitudes and subjective norms. CONCLUSIONS: Caregivers' vaccination intentions for minor CCS are highly related to vaccination behavior and shaped by attitudes, subjective norms, COVID-19 health literacy, and frequency of COVID-19 information-seeking. Promoting tailored communication with caregivers of CCS and encouraging them to review reputable sources of information can address their vaccine hesitancy.

Disease knowledge and health literacy in parents of children with sickle cell disease.

We aimed to (1) describe sickle cell disease (SCD) knowledge and health literacy levels in parents of children with SCD, (2) examine associations with socio-demographic factors and (3) analyse the association with hospital admissions and frequency of occurrence of painful episodes. Parents who presented with their child at routine hospital consultation at the National Sickle Cell Disease Centre in Benin were administered a questionnaire assessing SCD knowledge, health literacy (newest vital sign [NVS]) and socio-demographic and clinical characteristics. In total, 117 parents participated (108, 92.3% females). The predominant SCD genotype was HbSS (79.5%). The average SCD knowledge score was 13.6 (standard deviation [SD] = 2.0). Only 34 (29.1%) participants correctly answered ≥70% of the questions, indicating good knowledge. Health literacy was relatively low (mean NVS score = 3.3; SD = 1.1). SCD knowledge was higher in parents with older children (p = 0.001) and higher education levels (primary, p = 0.010; tertiary, p = 0.036 compared to participants with no formal education). Hospital admissions were more frequent when parents had lower SCD knowledge (p = 0.034) and in parents with younger children (p = 0.039). No associations were found between health literacy and hospital admissions (p = 0.940) and frequency of occurrence of painful episodes (p = 0.224). Continuous disease-specific education for parents of children with SCD may help them better identify and prevent the occurrence of symptoms and decrease the number of hospital admissions.

Education, Employment, and Financial Outcomes in Adolescent and Young Adult Cancer Survivors-A Systematic Review.

Adolescents and young adults (AYAs) with cancer face unique challenges. We aimed to describe (i) education, employment, and financial outcomes and (ii) determinants for adverse outcomes in AYA cancer survivors. We performed a systematic literature search. We included original research articles on AYA (15-39 years of age) cancer survivors (≥2 years after diagnosis) and our outcomes of interest. We narratively synthesized the results of the included articles. We included 35 articles (24 quantitative and 11 qualitative studies). Patients in education had to interrupt their education during cancer treatment, and re-entry after treatment was challenging. After treatment, most survivors were employed but started their employment at an older age than the general population. Overall, no disadvantages in income were found. Survivors reported more absent workdays than comparisons. We identified chemotherapy, radiotherapy, late effects or health problems, female sex, migration background, and lower education associated with adverse outcomes. Although most AYA cancer survivors were able to re-enter education and employment, they reported difficulties with re-entry and delays in their employment pathway. To facilitate successful re-entry, age-tailored support services should be developed and implemented.

Interplay of Digital Proximity App Use and SARS-CoV-2 Vaccine Uptake in Switzerland: Analysis of Two Population-Based Cohort Studies.

Objectives: Our study aims to evaluate developments in vaccine uptake and digital proximity tracing app use in a localized context of the SARS-CoV-2 pandemic. Methods: We report findings from two population-based longitudinal cohorts in Switzerland from January to December 2021. Failure time analyses and Cox proportional hazards regression models were conducted to assess vaccine uptake and digital proximity tracing app (SwissCovid) uninstalling outcomes. Results: We observed a dichotomy of individuals who did not use the SwissCovid app and did not get vaccinated, and who used the SwissCovid app and got vaccinated during the study period. Increased vaccine uptake was observed with SwissCovid app use (aHR, 1.51; 95% CI: 1.40-1.62 [CI-DFU]; aHR, 1.79; 95% CI: 1.62-1.99 [CSM]) compared to SwissCovid app non-use. Decreased SwissCovid uninstallation risk was observed for participants who got vaccinated (aHR, 0.55; 95% CI: 0.38-0.81 [CI-DFU]; aHR, 0.45; 95% CI: 0.27-0.78 [CSM]) compared to participants who did not get vaccinated. Conclusion: In evolving epidemic contexts, these findings underscore the need for communication strategies as well as flexible digital proximity tracing app adjustments that accommodate different preventive measures and their anticipated interactions.

Posttraumatic growth and illness perception in survivors of adolescent and young adult cancer.

BACKGROUND: Adolescents and young adults (AYAs) are diagnosed with cancer during a challenging period of life. We aimed to (1) describe positive changes (posttraumatic growth; PTG) and illness perception, and (2) determine associations between PTG and illness perception, sociodemographic, and cancer-related characteristics in Swiss AYA cancer survivors. METHODS: We conducted a population-based survey among AYA cancer survivors diagnosed 1990-2005 at age 16-25 years, who had survived ≥ 5 years. We used the Posttraumatic Growth Inventory (PTGI) and the Brief Illness Perception Questionnaire (BIPQ). Data were analyzed using descriptive statistics and linear regressions. RESULTS: Among 389 contacted survivors, 160 responded (61.3% male; mean age = 34 years, SD = 5.8). The mean PTG sum score was 54.63 (SD = 20.24; range: 8-101). Survivors reported high PTG especially in the domains Appreciation of life (mean = 3.23; 95% confidence interval, 3.05-3.40), Personal strength (2.94; 2.77-3.12), and Relating to others (2.57; 2.40-2.74). Neither sociodemographic nor cancer-related characteristics were associated with PTG. Survivors who perceived follow-up care as helpful (p < 0.001) and those with high concerns about the consequences of the illness (p < 0.001) reported higher PTG. CONCLUSIONS: Finding ways to promote PTG and to identify and address maladaptive illness perceptions may help survivors transform their experience into something meaningful for their future life.

Acute and long-term psychosocial consequences in grandparents when a grandchild is diagnosed with cancer - the GROKids Project: a population-based mixed-methods study protocol.

BACKGROUND: Grandparents play a crucial role in providing their families with love, support, and wisdom, often also supporting them in practical and financial ways. The psychosocial effects experienced by grandparents when a grandchild is diagnosed with an illness can be significant, including increased stress, anxiety, grief, and disruptions in their own lives. Yet, the experience of grandparents is often overlooked in the literature. METHODS/DESIGN: The GROKids Project aims to investigate how grandparents are affected by a grandchild's cancer diagnosis. It employs a mixed-methods approach and consists of three studies: a longitudinal cohort study (Study 1) and a qualitative study (Study 2) involving grandparents of children with a recent cancer diagnosis, and a cross-sectional study (Study 3) of grandparents of childhood cancer survivors. Study 1 covers four time points over two years after the cancer diagnosis, while Study 2 explores the lived experiences of a subsample of these grandparents. Study 3 collects data from grandparents of childhood cancer survivors diagnosed 3 to 10 years ago. Participants are recruited across eight pediatric oncology centers in Switzerland, and through patient advocacy and support groups. Eligibility criteria include having a grandchild diagnosed with cancer and being fluent in German, French, or Italian. Study procedures involve requesting grandparents' contacts from eligible families, and later contacting grandparents, providing study information, obtaining informed consent, and sending out questionnaires by post or online. Reminder calls and mails are used to improve response rates. Data analysis includes multilevel regression (Study 1), thematic analysis (Study 2), and regression analyses (Study 3). Various validated questionnaires are used to assess physical health and overall well-being, psychological health, internal, and external factors. DISCUSSION: This project addresses the gaps in understanding the psychosocial effects on grandparents having a grandchild diagnosed with cancer. It utilizes a comprehensive approach, including multiple methodologies and considering the broader family context. The project's strengths lie in its mixed-methods design, longitudinal approach, and inclusion of the perspectives of the sick children, siblings, and parents, besides grandparents. By gaining a more profound understanding of grandparents' experiences, researchers and healthcare professionals can develop targeted interventions and support services to address grandparents' unique needs.