Health-related quality of life before and during the COVID-19 pandemic in Switzerland: a cross-sectional study.

INTRODUCTION The COVID-19 pandemic forced people to give up their daily routines and adjust to new circumstances. This might have affected health-related quality of life (HRQOL). We aimed to compare HRQOL during the first COVID-19 wave in 2020 to HRQOL before the pandemic and to identify determinants of HRQOL during the pandemic in Switzerland. METHODS We conducted a cross-sectional online survey during the pandemic (between May and July 2020; CoWELL sample; convenience sample). Before the pandemic (2015-2016), we had conducted a cross-sectional paper-based survey among a representative random sample of the Swiss general population (SGP sample). In both samples, we assessed physical and mental HRQOL (Short Form-36) and socio-demographic characteristics. In the CoWELL sample, we additionally assessed health- and COVID-19-related characteristics. Data were analysed using linear regressions. RESULTS The CoWELL sample included 1581 participants (76% women; mean age = 43 years, SD = 14 years) and the SGP sample 1209 participants (58% women, mean age = 49 years, SD = 15 years). Adjusted for sex, age, and education, the CoWELL sample reported higher physical HRQOL (PCS, +5.8 (95% CI: 5.1, 6.6), p < 0.001) and lower mental HRQOL (MCS, -6.9 (-7.8, -6.0), p < 0.001) than the SGP sample. In the CoWELL sample, especially persons with lower health literacy, who had no support network or who have had COVID-19, reported lower HRQOL. DISCUSSION Aspects unique to the COVID-19 pandemic affected HRQOL. Vulnerable persons such as those having had COVID-19, less support opportunities, and with lower health literacy are especially prone to impaired HRQOL during the COVID-19 pandemic

COVID-19 Information-Seeking, Health Literacy, and Worry and Anxiety During the Early Stage of the Pandemic in Switzerland: A Cross-Sectional Study.

Objectives: To describe COVID-19 information-seeking behavior (CISB) during the first stage of the pandemic in Switzerland and identify its determinants. Methods: We conducted an online cross-sectional survey (4 May to 6 July 2020). Participants self-reported their CISB (information sources and frequency), personal COVID-19 situation (e.g., perception about having had COVID-19), sociodemographic information, and completed validated measures of health literacy, and worry and anxiety. Data were analyzed using descriptive statistics and logistic regressions. Results: We included 1,505 participants (24.7% male; mean age = 43.0 years, SD = 13.9). Most participants reported searching for information daily (n = 1,023, 68.0%) and referring to multiple information sources (mean 3.7, SD = 1.5). Commonly used sources were official websites (n = 1,129, 75.0%) and newspapers (n = 997, 66.2%). Participants with higher health literacy were more likely to seek information daily and use online resources, but less likely to use personal networks than those with lower health literacy. We did not find any association between CISB and worry and anxiety. Conclusion: More opportunities for personal dialogue and education about reliable online information resources should be encouraged to optimize the CISB of groups with lower health literacy

Leveraging Economies of Scale via Collaborative Interdisciplinary Global Health Tracks (CIGHTs): Lessons From Three Programs

As interest in global health education continues to increase, residency programs seeking to accommodate learners’ expectations for global health learning opportunities often face challenges providing high-quality global health training. To address these challenges, some residency programs collaborate across medical specialties to create interdepartmental global health residency tracks or collaborative interdepartmental global health tracks (CIGHTs). In this Perspective, the authors highlight the unique aspects of interdepartmental tracks that may benefit residency programs by describing three established U.S.-based programs as models: those at Indiana University, Mount Sinai Hospital, and the University of Virginia. Through collaboration and economies of scale, CIGHTs are able to address some of the primary challenges inherent to traditional global health tracks: lack of institutional faculty support and resources, the need to develop a global health curriculum, a paucity of safe and mentored international rotations, and inconsistent resident interest. Additionally, most published global health learning objectives and competencies (e.g., ethics of global health work, pre-departure training) are not discipline-specific and can therefore be addressed across departments—which, in turn, adds to the feasibility of CIGHTs. Beyond simply sharing the administrative burden, however, the interdepartmental learning central to CIGHTs provides opportunities for trainees to gain new perspectives in approaching global health not typically afforded in traditional global health track models. Residency program leaders looking to implement or modify their global health education offerings, particularly those with limited institutional support, might consider developing a CIGHT as an approach that leverages economies of scale and provides new opportunities for collaboration

National Divergences in Perinatal Palliative Care Guidelines and Training in Tertiary NICUs

Objectives: Despite established principles of perinatal palliative care (PnPC), implementation into practice has shown inconsistencies. The aim of this study was to assess PnPC services, examine healthcare professionals (HCPs) awareness and availability of PnPC guidelines, and describe HCPs satisfaction with PC and guidelines. Material and Methods: A nationwide survey was conducted in Swiss tertiary NICUs between April-November 2019. Data were examined by descriptive statistics and linear regression models. Results: Overall response rate was 54% (65% physicians; 49% nurses; 72% psychosocial staff). Half of professionals (50%) received education in PC during their medical/nursing school, whereas 36% indicated they obtained further training in PnPC at their center. PnPC guidelines were available in 4/9 centers, with 68% HCPs being aware of the guideline. Professionals who had access to a PnPC team (P = 0.001) or were part of the nursing (P = 0.003) or psychosocial staff (P = 0.001) were more likely aware of having a guideline. Twenty-eight percent indicated being satisfied with PC in their center. Professionals with guideline awareness (P = 0.025), further training (P = 0.001), and access to a PnPC team (P < 0.001) were more likely to be satisfied, whereas HCPs with a nursing background (P < 0.001) were more likely to be dissatisfied. A majority expressed the need for a PnPC guideline (80%) and further PC training (94%). Conclusion: This study reveals lacking PnPC guidelines and divergences regarding onsite opportunities for continued training across Swiss level III NICUs. Extending PnPC guidelines and training services to all centers can help bridge the barriers created by fragmented practice

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

Attendance to Follow-Up Care in Survivors of Adolescent and Young Adult Cancer: Application of the Theory of Planned Behavior.

PURPOSE The aim was to study follow-up care attendance in adolescent and young adult (AYA) cancer survivors to investigate: (1) correlates of the intention to attend follow-up care and (2) whether the intention is associated with the actual attendance, applying the theory of planned behavior (TPB). METHODS We conducted a questionnaire survey in AYA cancer survivors diagnosed 1990-2005 at age 16-25 years, registered in the Cancer Registry Zurich and Zug, Switzerland, who had survived at least 5 years. Structural equation modeling was applied to investigate TPB-related correlates (attitudes, subjective norms, and perceived behavioral control) of intention to attend follow-up care. Logistic regression analysis was used to study the association between intention and actual attendance. RESULTS We included 160 AYA cancer survivors in the study (mean age at study: 34.0 years, mean age at diagnosis: 21.6 years, 98 [61.3%] male). Positive attitudes toward follow-up care (coefficient = 0.32, 95% confidence interval [CI]: 0.05 to 0.60) and supportive subjective norms (coefficient = 0.59, 95% CI: 0.41 to 0.78) were associated with higher intention to attend follow-up care. Perceived behavioral control was not associated with intention to attend (coefficient = -0.13, 95% CI: -0.36 to 0.10), but with actual attendance (odds ratio [OR] = 4.55, 95% CI: 1.83 to 11.31). Higher intention was associated with actual follow-up care attendance (OR = 14.29, 95% CI: 5.80 to 35.21). CONCLUSION Positive attitudes and supportive social norms were associated with higher intention to attend follow-up care, and higher intention was associated with actual follow-up care attendance. Increasing awareness of the importance and benefits of follow-up care not only among survivors but also family, friends and healthcare professionals may help increase follow-up care attendance among AYA cancer survivors

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

Loss of Dermatan-4-Sulfotransferase 1 Function Results in Adducted Thumb-Clubfoot Syndrome

Adducted thumb-clubfoot syndrome is an autosomal-recessive disorder characterized by typical facial appearance, wasted build, thin and translucent skin, congenital contractures of thumbs and feet, joint instability, facial clefting, and coagulopathy, as well as heart, kidney, or intestinal defects. We elucidated the molecular basis of the disease by using a SNP array-based genome-wide linkage approach that identified distinct homozygous nonsense and missense mutations in CHST14 in each of four consanguineous families with this disease. The CHST14 gene encodes N-acetylgalactosamine 4-O-sulfotransferase 1 (D4ST1), which catalyzes 4-O sulfation of N-acetylgalactosamine in the repeating iduronic acid-alpha 1,3-N-acetylgalactosamine disaccharide sequence to form dermatan sulfate. Mass spectrometry of glycosaminoglycans from a patient's fibroblasts revealed absence of dermatan sulfate and excess of chondroitin sulfate, showing that 4-O sulfation by CHST14 is essential for dermatan sulfate formation in vivo. Our results indicate that adducted thumb-clubfoot syndrome is a disorder resulting from a defect specific to dermatan sulfate biosynthesis and emphasize roles for dermatan sulfate in human development and extracellular-matrix maintenance