COVID-19 has developed into a worldwide pandemic which was accompanied by an «infodemic» consisting of much false and misleading information. To cope with these new challenges, health literacy plays ...an essential role. The aim of this paper is to present the findings of a trend study in Switzerland on corona-specific health literacy, the use of and trust in information sources during the COVID-19 pandemic, and their relationships.
Three online surveys each with approximately 1'020 individuals living in the German-speaking part of Switzerland (age ≥ 18 years) were conducted at different timepoints during the COVID-19 pandemic, namely spring, fall and winter 2020. For the assessment of corona-specific health literacy, a specifically developed instrument (HLS-COVID-Q22) was used. Descriptive, bivariate, and multivariate data analyses have been conducted.
In general, a majority of the Swiss-German population reported sufficient corona-specific health literacy levels which increased during the pandemic: 54.6% participants in spring, 62.4% in fall and 63.3% in winter 2020 had sufficient corona-specific health literacy. Greatest difficulties concerned the appraisal of health information on the coronavirus. The most used information sources were television (used by 73.3% in spring, 70% in fall and 72.3% in winter) and the internet (used by 64.1, 64.8 and 66.5%). Although health professionals, health authorities and the info-hotline were rarely mentioned as sources for information on the coronavirus, respondents had greatest trust in them. On the other hand, social media were considered as the least trustworthy information sources. Respondents generally reporting more trust in the various information sources, tended to have higher corona-specific health literacy levels.
Sufficient health literacy is an essential prerequisite for finding, understanding, appraising, and applying health recommendations, particularly in a situation where there is a rapid spread of a huge amount of information. The population should be supported in their capability in appraising the received information and in assessing the trustworthiness of different information sources.
To address Young Carers' (YCs) needs for space and opportunities to reflect and exchange, a guided peer-support programme, the "Get-togethers", was developed in collaboration with YC in Switzerland ...in 2018. In order to evaluate if the Get-togethers were able to meet their originally set goals of (1) strengthening support among YCs, (2) promoting their life skills, (3) strengthening their social network and (4) promoting the inclusion and participation of YCs, participants of the Get-togethers were asked to complete a short questionnaire about their participation in and experiences with the Get-togethers. We also analysed the standard documentation of 17 Get-togethers held between May 2021 and September 2023. Overall, the Get-togethers were rated positively in almost all areas of the survey and the documentation, indicating that the four originally set objectives of the Get-togethers were (at least largely) achieved. The Get-togethers covered a large part of the needs of YCs, such as emotional support and opportunities to relax and exchange with people in a similar situation, yet they largely failed to reach minor YCs and male YCs. Further support programmes should be developed to address the different needs of different groups of YCs.
Introduction
Allogeneic stem cell transplantation survivors are at a relevant risk of developing chronic GvHD (cGvHD), which importantly affects quality of life and increases morbidity and mortality. ...Early identification of patients at risk of cGvHD-related morbidity could represent a relevant tool to tailor preventive strategies. The aim of this study was to evaluate the prognostic power of immune reconstitution (IR) at cGvHD onset through an IR-based score.
Methods
We analyzed data from 411 adult patients consecutively transplanted between January 2011 and December 2016 at our Institution: 151 patients developed cGvHD (median follow-up 4 years). A first set of 111 consecutive patients with cGvHD entered the test cohort while an additional consecutive 40 patients represented the validation cohort. A Cox multivariate model for OS (overall survival) in patients with cGvHD of any severity allowed the identification of six variables independently predicting OS and TRM (transplant-related mortality). A formula for a prognostic risk index using the β coefficients derived from the model was designed. Each patient was assigned a score defining three groups of risk (low, intermediate, and high).
Results
Our multivariate model defined the variables independently predicting OS at cGvHD onset: CD4+ >233 cells/mm
3
, NK <115 cells/mm
3
, IgA <0.43g/L, IgM <0.45g/L, Karnofsky PS <80%, platelets <100x10
3
/mm
3
. Low-risk patients were defined as having a score ≤3.09, intermediate-risk patients >3.09 and ≤6.9, and high-risk patients >6.9. By ROC analysis, we identified a cut-off of 6.310 for both TRM and overall mortality.
In the training cohort, the 6-year OS and TRM from cGvHD occurrence were 85% (95% CI, 70-92) and 13% (95% CI, 5-25) for low-risk, 64% (95% CI, 44-89) and 30% (95% CI, 15-47) for intermediate-risk, 26% (95% CI, 10-47), and 42% (95% CI, 19-63) for high-risk patients (OS p<0.0001; TRM p = 0.015).
The validation cohort confirmed the model with a 6-year OS and TRM of 83% (95% CI, 48-96) and 8% (95% CI, 1-32) for low-risk, 78% (95% CI, 37-94) and 11% (95% CI, 1-41) for intermediate-risk, 37% (95% CI, 17-58), and 63% (95% CI, 36-81) for high-risk patients (OS p = 0.0075; TRM p = 0.0009).
Conclusions
IR score at diagnosis of cGvHD predicts GvHD severity and overall survival. IR score may contribute to the risk stratification of patients. If confirmed in a larger and multicenter-based study, IR score could be adopted to identify patients at high risk and modulate cGvHD treatments accordingly in the context of clinical trial.
Health literacy (HL) is an important health determinant and necessary to be able to make informed decisions for one’s health. The pandemic, the complexity of the health system, the digitalization as ...well as other developments pose great challenges to the population. Health professionals (HP) play an important role to encounter these challenges, as they inform, advise and empower their users to manage their health. However, HP need the corresponding competencies to address HL of their users. However, at least for Switzerland and regarding HL it remains unclear, which motivation, knowledge, and skills HP need therefore.
A Delphi study of two rounds with 24 experts from German-speaking countries in this field was conducted. Based on a preceding literature analysis, they were asked to evaluate and rate core competencies of health professionals regarding HL. Additionally, they had the possibility to provide written feedback and recommendations.
Out of the originally 65 competencies, 14 core competencies (5 knowledge, 7 skills, and 2 motivation) were evaluated as relevant after the two rounds of rating. In the first round of the Delphi study 27 core competencies were classified as relevant, and 4 core competencies were newly added. Thereby a cut-off of 85% agreement on each item by all experts was applied. After the second round and the application of a cut-off of 70% agreement and an according ranking, 14 core competencies remained.
The present Delphi study identified 14 relevant core competencies regarding HL for HP in Switzerland, whereby especially communication skills seemed to be important. The identified core competencies might be important for future assessments of core competencies of HP concerning HL, and the development of tailor-made trainings and education.
During doctor's visits, fundamental decisions regarding a patient's diagnosis and therapy are taken. However, consultations often take place within a limited time frame and are characterized by an ...asymmetric interaction. Therefore, patients' questions can remain unanswered and concerns unspoken. A "Patients' Guide for Doctor's Visit" (DocVISITguide) was developed to prepare patients for their visits, supporting them to take an active role in the communication and leave the consultation well-informed. This paper describes the development of the DocVISITguide and its first small-scale evaluation based on a sequential explanatory mixed methods design from the patients' perspective. For this purpose, a small sample of patients completed a pre- and post-questionnaire, and two in-depth interviews were conducted. Most participants found the DocVISITguide easy to understand. The guide helped them to take a closer look at their own health situation and be better prepared for the visit. More than three-quarters (82%) of the participants would probably use the guide again, and all (100%) would recommend it to family and friends. However, some patients felt unsure about using the guide within the consultation and showing it to their physician. To counteract this uncertainty, physicians should be actively involved in the use of such guides in the future.
Summary
Reliable biomarkers are needed to avoid diagnostic delay and its devastating effects in patients with primary central nervous system (CNS) lymphoma (PCNSL). We analysed the discriminating ...sensitivity and specificity of myeloid differentiation primary response (88) (MYD88) L265P mutation (mut‐MYD88) and interleukin‐10 (IL‐10) in cerebrospinal fluid (CSF) of both patients with newly diagnosed (n = 36) and relapsed (n = 27) PCNSL and 162 controls (118 CNS disorders and 44 extra‐CNS lymphomas). The concordance of MYD88 mutational status between tumour tissue and CSF sample and the source of ILs in PCNSL tissues were also investigated. Mut‐MYD88 was assessed by TaqMan‐based polymerase chain reaction. IL‐6 and IL‐10 messenger RNA (mRNA) was assessed on PCNSL biopsies using RNAscope technology. IL levels in CSF were assessed by enzyme‐linked immunosorbent assay. Mut‐MYD88 was detected in 15/17 (88%) PCNSL biopsies, with an 82% concordance in paired tissue‐CSF samples. IL‐10 mRNA was detected in lymphomatous B cells in most PCNSL; expression of IL‐6 transcripts was negligible. In CSF samples, mut‐MYD88 and high IL‐10 levels were detected, respectively, in 72% and 88% of patients with newly diagnosed PCNSL and in 1% of controls; conversely, IL‐6 showed a low discriminating sensitivity and specificity. Combined analysis of MYD88 and IL‐10 exhibits a sensitivity and specificity to distinguish PCNSL of 94% and 98% respectively. Similar figures were recorded in patients with relapsed PCNSL. In conclusion, high detection rates of mut‐MYD88 and IL‐10 in CSF reflect, respectively, the MYD88 mutational status and synthesis of this IL in PCNSL tissue. These biomarkers exhibit a very high sensitivity and specificity in detecting PCNSL both at initial diagnosis and relapse. Implications of these findings in patients with lesions unsuitable for biopsy deserve to be investigated.
Managing health information and services is difficult for nearly half of the population in Switzerland. Low health literacy has been shown to result in poorer health and health outcomes as well as a ...higher utilization of health services. To date, studies on health literacy in Switzerland have focused on a national level. However, Switzerland is a federal state with 26 cantons and a strongly decentralized health system. Therefore, the aim of this study is to understand how health literacy is distributed within the population of the canton of Zurich specifically, and to develop methods to determine whether an individual has a higher or lower level of health literacy. There were a total of 1000 participants in this representative study. Data was collected by an adapted version of the HLS-EU-Q47 and additional sociodemographic questions. The majority (56%) of the reported difficulties concerned accessing, understanding, appraising, and applying health information. The findings confirm that health literacy follows a social gradient, whereby financially deprived individuals and those with a low educational level report lower health literacy. The need for action to strengthen the health literacy of these population groups is therefore urgent. Interventions should pay particular attention to these vulnerable groups and tailor resolutions to their needs and preferences.
Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service ...frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.
This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project ...'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.
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