Parents' and neonatal healthcare professionals' views on barriers and facilitators to parental presence in the neonatal unit: a qualitative study.

BACKGROUND: Parent and infant separation in the neonatal unit is associated with adverse health outcomes. Family-integrated care has several advantages and the potential to reduce these adverse outcomes but requires parental presence. This study aimed to explore the views of parents and neonatal healthcare professionals (nHCPs) on barriers and facilitators to parental presence in a Swiss neonatal unit and to identify possible differences between nHCPs and parents, and between mothers and fathers. METHODS: Data were collected through semi-structured interviews with parents and focus group discussions with nHCPs. Inductive content analysis was used to identify barriers and facilitators to parental presence in the neonatal unit. RESULTS: Twenty parents (10 mothers and 10 fathers) and 21 nHCPs (10 nurses and 11 physicians) participated in the study. Parents and nHCPs experienced barriers and facilitators related to: (1) Structural factors of the institution, such as infrastructure or travel and distance to the neonatal unit. (2) Organization and time management of parental presence, daily activities, and work. (3) Resources, which include factors related to the legal situation, support services, family, and friends. (4) Physical and psychological aspects, such as pain, which mainly affected mothers, and aspects of emotional distress, which affected both parents. Self-care was an important physical and psychological facilitator. (5) Parent-professional interaction. Parental presence was influenced by communication, relationship, and interaction in infant care; and (6) Cultural aspects and language. Some perspectives differed between mothers and fathers, while the overall views of parents and nHCPs provided complementary rather than conflicting insights. Using visit plans to support the organization, educating nHCPs in knowledge skills and available resources to improve encouragement and information to parents, strengthening parent self-care, and improving nHCPs' attitudes towards parental presence were seen as possible improvements. CONCLUSIONS: Multifactorial barriers and facilitators determine parental presence and experience in the neonatal unit. Parents and nHCPs made specific recommendations to improve parental presence.

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.

Changes in Healthcare Utilization During the COVID-19 Pandemic and Potential Causes-A Cohort Study From Switzerland.

Objectives: To describe the frequency of and reasons for changes in healthcare utilization in those requiring ongoing treatment, and to assess characteristics associated with change, during the second wave of the pandemic. Methods: Corona Immunitas e-cohort study (age ≥20 years) participants completed monthly questionnaires. We compared participants reporting a change in healthcare utilization with those who did not using descriptive and bivariate statistics. We explored characteristics associated with the number of changes using negative binomial regression. Results: The study included 3,190 participants from nine research sites. One-fifth reported requiring regular treatment. Among these, 14% reported a change in healthcare utilization, defined as events in which participants reported that they changed their ongoing treatment, irrespective of the reason. Reasons for change were medication changes and side-effects, specifically for hypertension, or pulmonary embolism treatment. Females were more likely to report changes [Incidence Rate Ratio (IRR) = 2.15, p = 0.002]. Those with hypertension were least likely to report changes [IRR = 0.35, p = 0.019]. Conclusion: Few of those requiring regular treatment reported changes in healthcare utilization. Continuity of care for females and chronic diseases besides hypertension must be emphasized.

Factors Associated With COVID-19 Non-Vaccination in Switzerland: A Nationwide Study.

Objectives: We compared socio-demographic characteristics, health-related variables, vaccination-related beliefs and attitudes, vaccination acceptance, and personality traits of individuals who vaccinated against COVID-19 and who did not vaccinate by December 2021. Methods: This cross-sectional study used data of 10,642 adult participants from the Corona Immunitas eCohort, an age-stratified random sample of the population of several cantons in Switzerland. We used multivariable logistic regression models to explore associations of vaccination status with socio-demographic, health, and behavioral factors. Results: Non-vaccinated individuals represented 12.4% of the sample. Compared to vaccinated individuals, non-vaccinated individuals were more likely to be younger, healthier, employed, have lower income, not worried about their health, have previously tested positive for SARS-CoV-2 infection, express lower vaccination acceptance, and/or report higher conscientiousness. Among non-vaccinated individuals, 19.9% and 21.3% had low confidence in the safety and effectiveness of SARS-CoV-2 vaccine, respectively. However, 29.1% and 26.7% of individuals with concerns about vaccine effectiveness and side effects at baseline, respectively vaccinated during the study period. Conclusion: In addition to known socio-demographic and health-related factors, non-vaccination was associated with concerns regarding vaccine safety and effectiveness.

Seroprevalence trends of anti-SARS-CoV-2 antibodies and associated risk factors: a population-based study.

PURPOSE: We aimed to assess the seroprevalence trends of SARS-CoV-2 antibodies in several Swiss cantons between May 2020 and September 2021 and investigate risk factors for seropositivity and their changes over time. METHODS: We conducted repeated population-based serological studies in different Swiss regions using a common methodology. We defined three study periods: May-October 2020 (period 1, prior to vaccination), November 2020-mid-May 2021 (period 2, first months of the vaccination campaign), and mid-May-September 2021 (period 3, a large share of the population vaccinated). We measured anti-spike IgG. Participants provided information on sociodemographic and socioeconomic characteristics, health status, and adherence to preventive measures. We estimated seroprevalence with a Bayesian logistic regression model and the association between risk factors and seropositivity with Poisson models. RESULTS: We included 13,291 participants aged 20 and older from 11 Swiss cantons. Seroprevalence was 3.7% (95% CI 2.1-4.9) in period 1, 16.2% (95% CI 14.4-17.5) in period 2, and 72.0% (95% CI 70.3-73.8) in period 3, with regional variations. In period 1, younger age (20-64) was the only factor associated with higher seropositivity. In period 3, being aged ≥ 65 years, with a high income, retired, overweight or obese or with other comorbidities, was associated with higher seropositivity. These associations disappeared after adjusting for vaccination status. Seropositivity was lower in participants with lower adherence to preventive measures, due to a lower vaccination uptake. CONCLUSIONS: Seroprevalence sharply increased over time, also thanks to vaccination, with some regional variations. After the vaccination campaign, no differences between subgroups were observed.

Changes in socioeconomic resources and mental health after the second COVID-19 wave (2020-2021): a longitudinal study in Switzerland.

BACKGROUND: During the 2020/2021 winter, the labour market was under the impact of the COVID-19 pandemic. Changes in socioeconomic resources during this period could have influenced individual mental health. This association may have been mitigated or exacerbated by subjective risk perceptions, such as perceived risk of getting infected with SARS-CoV-2 or perception of the national economic situation. Therefore, we aimed to determine if changes in financial resources and employment situation during and after the second COVID-19 wave were prospectively associated with depression, anxiety and stress, and whether perceptions of the national economic situation and of the risk of getting infected modified this association. METHODS: One thousand seven hundred fifty nine participants from a nation-wide population-based eCohort in Switzerland were followed between November 2020 and September 2021. Financial resources and employment status were assessed twice (Nov2020-Mar2021, May-Jul 2021). Mental health was assessed after the second measurement of financial resources and employment status, using the Depression, Anxiety and Stress Scale (DASS-21). We modelled DASS-21 scores with linear regression, adjusting for demographics, health status, social relationships and changes in workload, and tested interactions with subjective risk perceptions. RESULTS: We observed scores above thresholds for normal levels for 16% (95%CI = 15-18) of participants for depression, 8% (95%CI = 7-10) for anxiety, and 10% (95%CI = 9-12) for stress. Compared to continuously comfortable or sufficient financial resources, continuously precarious or insufficient resources were associated with worse scores for all outcomes. Increased financial resources were associated with higher anxiety. In the working-age group, shifting from full to part-time employment was associated with higher stress and anxiety. Perceiving the Swiss economic situation as worrisome was associated with higher anxiety in participants who lost financial resources or had continuously precarious or insufficient resources. CONCLUSION: This study confirms the association of economic stressors and mental health during the COVID-19 pandemic and highlights the exacerbating role of subjective risk perception on this association.

Worries and anxiety in parents of adult survivors of childhood cancer: A report from the Swiss Childhood Cancer Survivor Study-Parents.

OBJECTIVE: Having a child diagnosed with cancer is distressing for parents. We aimed to compare worries and anxiety in parents of adult childhood cancer survivors with parents of the Swiss general population (GP-parents), and to evaluate characteristics associated with worry in parents of survivors. METHODS: We conducted a nationwide, population-based study in parents of survivors (survivors aged ≥20 years at study, ≤16 years at diagnosis, >5 years post diagnosis) and GP-parents (≥1 child aged ≥20 years at study). We used the Worry and Anxiety Questionnaire (WAQ), and computed the WAQ total score (worries; possible range 0-80) and caseness for generalized anxiety disorder (anxiety), cognitive, somatic, and any criteria. We used multilevel, multivariable linear regression to identify characteristics associated with worries in parents of survivors. RESULTS: We included 787 parents of 513 survivors (41.0% fathers) and 478 GP-parents (42.3% fathers). Parents of survivors and GP-parents did not differ regarding worries (16.6 vs. 17.1, p = .977), anxiety (2.7% vs. 3.6%, p = .536), cognitive (p = .440), and somatic criteria (p = .067). Less parents of survivors met any criteria (17.7% vs. 24.0%, p = .039). Half of parents reported current cancer-related worries. Higher cancer-related worries were reported by mothers (ß = 4.1; 95% CI: 2.0-6.2), parents with one child (ß = 5.9; 95% CI: 2.0-9.7), currently experiencing disadvantages because of their child's former disease (ß = 7.3; 95% CI: 4.0-10.6), or with support needs (ß = 9.0; 95% CI: 3.9-14.2; p = .001). CONCLUSIONS: It is encouraging that most parents of adult survivors report similar worries and anxiety as GP-parents, but cancer-related worries are still prevalent. Efforts should be made to empower parents to seek psycho-social support if required.

Is living in a household with children associated with SARS-CoV-2 seropositivity in adults? Results from the Swiss national seroprevalence study Corona Immunitas.

BACKGROUND: We aimed to determine whether living in a household with children is associated with SARS-CoV-2 seropositivity in adults and investigated interacting factors that may influence this association. METHODS: SARS-CoV-2 serology testing was performed in randomly selected individuals from the general population between end of October 2020 and February 2021 in 11 cantons in Switzerland. Data on sociodemographic and household characteristics, employment status, and health-related history was collected using questionnaires. Multivariable logistic regression was used to examine the association of living with children <18 years of age (number, age group) and SARS-CoV-2 seropositivity. Further, we assessed the influence of reported non-household contacts, employment status, and gender. RESULTS: Of 2393 working age participants (18-64 years), 413 (17.2%) were seropositive. Our results suggest that living with children and SARS-CoV-2 seropositivity are likely to be associated (unadjusted odds ratio (OR) 1.22, 95% confidence interval [0.98-1.52], adjusted OR 1.25 [0.99-1.58]). A pattern of a positive association was also found for subgroups of children aged 0-11 years (OR 1.21 [0.90-1.60]) and 12-17 years (OR 1.14 [0.78-1.64]). Odds of seropositivity were higher with more children (OR 1.14 per additional child [1.02-1.27]). Men had higher risk of SARS-CoV-2 infection when living with children than women (interaction: OR 1.74 [1.10-2.76]). CONCLUSIONS: In adults from the general population living with children seems associated with SARS-CoV-2 seropositivity. However, child-related infection risk is not the same for every subgroup and depends on factors like gender. Further factors determining child-related infection risk need to be identified and causal links investigated. TRIAL REGISTRATION: https://www.isrctn.com/ISRCTN18181860 .

Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Survivors of childhood, adolescent, and young adult (diagnosed when <25 years of age) cancer are at risk of mental health problems. The aim of this clinical practice guideline is to harmonise international recommendations for mental health surveillance in survivors of childhood, adolescent, and young adult cancer. This guideline was developed by a multidisciplinary panel of experts under the sponsorship of the International Guideline Harmonization Group. We evaluated concordance among existing survivorship clinical practice guidelines and conducted a systematic review following evidence-based methods. Of 7249 studies identified, 76 articles from 12 countries met the inclusion criteria. Recommendations were formulated on the basis of identified evidence in combination with clinical considerations. This international clinical practice guideline strongly recommends mental health surveillance for all survivors of childhood, adolescent, and young adult cancers at every follow-up visit and prompt referral to mental health specialists when problems are identified. Overall, the recommendations reflect the necessity of mental health surveillance as part of comprehensive survivor-focused health care.

The Corona Immunitas Digital Follow-Up eCohort to Monitor Impacts of the SARS-CoV-2 Pandemic in Switzerland: Study Protocol and First Results.

Objectives: To describe the rationale, organization, and procedures of the Corona Immunitas Digital Follow-Up (CI-DFU) eCohort and to characterize participants at baseline. Methods: Participants of Corona Immunitas, a population-based nationwide SARS-CoV-2 seroprevalence study in Switzerland, were invited to join the CI-DFU eCohort in 11 study centres. Weekly online questonnaires cover health status changes, prevention measures adherence, and social impacts. Monthly questionnaires cover additional prevention adherence, contact tracing apps use, vaccination and vaccine hesitancy, and socio-economic changes. Results: We report data from the 5 centres that enrolled in the CI-DFU between June and October 2020 (covering Basel City/Land, Fribourg, Neuchâtel, Ticino, Zurich). As of February 2021, 4636 participants were enrolled and 85,693 weekly and 27,817 monthly questionnaires were collected. Design-based oversampling led to overrepresentation of individuals aged 65+ years. People with higher education and income were more likely to enroll and be retained. Conclusion: Broad enrolment and robust retention of participants enables scientifically sound monitoring of pandemic impacts, prevention, and vaccination progress. The CI-DFU eCohort demonstrates proof-of-principle for large-scale, federated eCohort study designs based on jointly agreed principles and transparent governance.

"I don't take for granted that I am doing well today": a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors.

PURPOSE: With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS' needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors' wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors' unmet needs. METHOD: In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. RESULTS: Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS' ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment. CONCLUSION: In our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors' needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support.

The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer.

BACKGROUND: The long-term consequences of childhood cancer have received increasing attention due to the growing number of survivors over the past decades. However, insurance hardships of survivors are mostly unknown. This study explored qualitatively, in a sample of childhood cancer survivors (CCS), (i) the experiences and needs of CCS living in Switzerland with a special focus on hardships related to insurance; and (ii) the views of insurance and law experts with experience on childhood cancer. METHODS: Semi-structured interviews were conducted with 28 childhood cancer survivors and 3 experts (one legal expert, two insurance experts). Data was analysed using qualitative content analysis. RESULTS: Three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS' concerns. Our findings indicated that some CCS can move past their cancer history, while others continue to face hardships. CCS reported confusion about the opportunities and services within the social security system and most relied on their personal contacts for guidance. Finally, CCS expressed a strong need for socio-economic and legal support for social insurance questions, especially related to disability insurance. CONCLUSIONS: With the growing population of CCS, it is essential to further assess the interplay between medical and psychosocial health and socio-economic hardship. Supportive psychosocial services should aim to ameliorate insurance hardships. Better understanding of the relationship between childhood cancer and insurance hardships during survivorship will inform efforts to improve long-term financial security and health outcomes for survivors. We call for the public, lawmakers, researchers, insurers, and patient organizations to come together and discuss future perspectives to avoid the risk of discrimination for cancer survivors.

The unmet needs of childhood cancer survivors in long-term follow-up care: A qualitative study.

OBJECTIVE: Evidence suggests benefits of long-term follow-up care attendance for childhood cancer survivors, but studies show poor inclusion of survivorship issues and needs. While information needs of childhood cancer survivors have been addressed previously, few studies specifically investigated the supportive care needs of survivors beyond the domain of information and communication. Therefore, this qualitative study aimed to assess the unmet needs of childhood cancer survivors with regards to their long-term survivorship. METHODS: Childhood Cancer Switzerland invited survivors of childhood cancer to participate in our study. We used semistructured interviews to assess survivors' experiences regarding the impact of their disease and the (un)met needs during their survivorship. Data analysis followed the principles of qualitative content analysis. RESULTS: Interviews were conducted with 28 childhood cancer survivors (mean age 31 years, age at diagnosis 9 years, time since end of treatment 19 years). Key themes in relation to unmet needs of survivors were (1) lacking psychosocial support, (2) lacking collaboration and decentralization of care, (3) starting from zero, and (4) need for centralized, specialized, and individualized services. CONCLUSIONS: Our findings revealed a demand for integrating psychosocial support in long-term follow-up care and a strong need for personalized, centralized, and interdisciplinary long-term follow-up care. Current established interdisciplinary clinics should be further extended to provide centralized, personalized, and evidence-based long-term follow-up care including adequate psychosocial support for all childhood cancer survivors.

Healthcare professionals' opinions on psychological screening in follow-up care for childhood cancer survivors.

INTRODUCTION: Implementation of screening for psychological distress in populations at risk, as recommended in existing guidelines, can be challenging on different levels: structural, organisational and personal (provider and patient). A specific group at risk for psychological distress, including anxiety and depression, is the growing population of childhood cancer survivors (CCS). In many countries, including Switzerland, the standardised assessment of psychological late effects during follow-up care is not yet established. The emotion thermometer, a short and validated assessment tool to screen for psychological distress, might facilitate implementation of psychological screening in Swiss CCS follow-up care. AIMS OF THE STUDY: To inform implementation strategy and assess readiness of centres to integrate standardised psychological screening, we conducted a cross-sectional survey. We describe healthcare professionals’ opinions on (i) the current standard of psychological screening in follow-up care, (ii) their experience using the emotion thermometer, and (iii) perceived barriers and facilitators of possible implementation of psychological screening, including the emotion thermometer. METHODS: We contacted 49 healthcare professionals involved in CCS follow-up care in all nine paediatric oncology clinics in Switzerland. The electronic survey included closed and open questions. RESULTS: A majority of the healthcare professionals (17/24, 71%) stated that assessment of psychological distress is currently not standard in follow-up care. On the contrary, about half of them (11/24, 46%) think that psychological distress is adequately assessed in follow-up care. None of the participants had any previous experience with the emotion thermometer. After being informed about the emotion thermometer, nearly 80% (19/24) agree that it appears to be a good screening instrument and support the idea of regular application during follow-up care. Facilitators of implementation included the instrument’s brevity, its ability to visualise psychological topics and raising awareness of the need to think about the psychological side of follow-up care. Barriers included lack of time, the additional effort and the perception that instead an informal assessment would be sufficient. Concerns about using an artificial assessment, rather than a natural conversation, were also expressed. CONCLUSIONS: There is overall agreement that screening for psychological late effects is not yet standard in follow-up care in Switzerland. It is important to mitigate perceived barriers and concerns of healthcare professionals to enable a successful implementation of psychological distress screening according to the established standards of care.

Post-traumatic stress in parents of long-term childhood cancer survivors compared to parents of the Swiss general population.

BACKGROUND: We describe post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD) in parents of long-term childhood cancer survivors (CCS-parents) and compare them to parents of similar-aged children (comparison-parents) of the Swiss general population (SGP). We compare type of reported stressful event, prevalence of PTSS and PTSD, and psychosocial and cancer-related characteristics associated with PTSS. We further describe the respective normative data for the SGP. METHODS: We conducted a nationwide cross-sectional questionnaire survey in a population-based sample of long-term CCS-parents (survivors aged ≤16 years at diagnosis, ≥20 years at study, >5 years post-diagnosis) and in the SGP. Using the Impact of Event Scale-Revised, we measured PTSS regarding the most stressful event experienced, and computed probable cases of PTSD. RESULTS: Participants included 663 CCS-parents (39.4% fathers) and 1035 individuals of the SGP (40.0% male), of which we identified 391 comparison-parents (41.2% fathers). Illness was most often indicated as stressful event (CCS-parents: 49.5%, comparison-parents: 27.6%, SGP: 25.3%). Prevalence of PTSS and PTSD (CCS-parents: 4.8%, comparison-parents: 6.7%, SGP: 5.6%) did not significantly differ. Lower education was associated with higher intrusion, avoidance, and hyperarousal in all samples (all P ≤ .003). Parents of children with a chronic illness reported higher intrusion (all P ≤ .004). We found no associations with cancer-related characteristics. CONCLUSIONS: No increased risk for PTSS or PTSD was found among CCS-parents. Individuals with lower education and those with a chronically ill child might benefit from additional support to help manage and resolve the stress symptoms in the long term.

A systematic review on the use of the emotion thermometer in individuals diagnosed with cancer.

OBJECTIVE: Physiological and psychological sequelae are frequent after a cancer diagnosis and also on the long term. Screening could help detect psychological distress early and thus enable timely provision of adequate treatment. The emotion thermometer (ET) is a validated screening tool including five dimensions (distress, anxiety, depression, anger, and need-for-help). Reviewing the literature, we aimed to describe (a) the validity and (b) the application of the ET. METHODS: Six databases were systematically searched for studies using the ET in individuals diagnosed with cancer. Included studies were critically appraised for methodological quality. ET validity and application were narratively synthesized. RESULTS: We identified 580 records eligible for title-abstract screening. Seventeen studies based on 13 different populations were included. Validation studies (5 of 17) concluded that the ET is sensitive to distress detection, delivering prompt and accurate results with no negative impact on clinic visit time. Furthermore, its use is accepted in patients and clinicians. The remaining 12 exploratory studies applied the ET for screening purposes (3 of 12), as outcome measure (6 of 12), or as predictor variable measure (3 of 12). Most studies were conducted in Europe (11 of 17), and 7 of the 12 exploratory studies used the recommended cutoff (greater than or equal to 4). Study populations were mostly female (9 of 13) with a mean age greater than 50 years (12 of 13) at study. CONCLUSIONS: Publications on distress screening with the ET are scarce, especially among young populations. However, research and studies' recommendations support the ET's utility as a valid and feasible tool for distress screening including anxiety and depression and suggest its implementation as part of a structured program for early screening in cancer care.

The long-term impact of cancer: Evaluating psychological distress in adolescent and young adult cancer survivors in Switzerland.

OBJECTIVES: Adolescents and young adults (AYAs) are diagnosed with cancer during a critical life period full of psychosocial challenges. They may experience a significant impact of the cancer diagnosis on their psychological health, also in the long term. We aimed to (a) evaluate psychological distress in AYA cancer survivors and compare levels of distress with controls and (b) describe socio-demographic and cancer-related characteristics associated with psychological distress. METHODS: We sent a questionnaire to AYA cancer survivors (aged 16-25 y at diagnosis, survived ≥5 y) registered in the Cancer Registry Zurich and Zug, Switzerland. Psychological distress was measured using the Brief Symptom Inventory-18 (BSI-18) assessing anxiety, depression, and somatization and a global severity index (GSI) (cutoff score indicating psychological distress: T ≥ 57). Distress levels were compared between survivors and controls. We used logistic regression to determine associations of socio-demographic and cancer-related characteristics with distress. RESULTS: Of 160 AYA cancer survivors, 34 (21%) reported being distressed (27% in women, 17% in men; P = 0.129). Compared with controls, survivors did not report higher levels of distress (all P values > 0.05). Survivors with migration background and survivors with late effects reported higher levels on GSI, somatization, and anxiety. Higher levels of depression were associated with being female, not being in a partnership, and having late effects. CONCLUSIONS: A substantial subgroup of AYA cancer survivors reported psychological distress. Systematically screening for distress and providing psychological follow-up for survivors at risk may help to provide adequate psychological support.

Health-related quality of life in adolescent and young adult cancer survivors.

PURPOSE: Today, survival rates for adolescent and young adult (AYA) cancer patients exceed 80%. However, cancer and treatment leave many patients suffering from chronic conditions. These late effects may impair their health-related quality of life (HRQoL). We aimed to (1) compare HRQoL of AYA cancer survivors with the Swiss general population and (2) investigate socio-demographic and cancer-related characteristics associated with poor HRQoL. METHODS: AYA cancer survivors (age 16-25 at diagnosis; ≥5 years survival) who had been identified through the Cancer Registry Zurich and Zug, Switzerland, filled out a questionnaire. We assessed HRQoL using the Short-Form 12 (SF-12), producing two scores: Physical Component Summary score (PCS, physical health) and Mental Component Summary score (MCS, mental health). We used multivariable logistic regression analyses to investigate associated characteristics. RESULTS: We compared 155 survivors with 350 controls. Survivors had significantly lower physical health than controls (mean = 52.5 vs. mean = 54.7, p < 0.001). Male survivors reported better mental health than controls (55.2 vs.53.3, p = 0.078) and females slightly worse (49.8 vs. 51.8, p = 0.285). Poor physical health was strongly associated with having a migration background (OR = 4.63, p = 0.008) and unemployment (OR = 7.66, p = 0.005). Poor mental health was associated with female sex (OR = 2.69, p = 0.057), suffering from late effects (OR = 5.91, p < 0.001) and a migration background (OR = 5.82, p = 0.004). CONCLUSIONS: Results emphasize the need for individualized support services to improve survivors' HRQoL in vulnerable subgroups. We recommend adapted care for women and migrants, in addition to educational and employment support systems.