Changes in the ability to correctly identify schizophrenia and depression: results from general population surveys in Germany over 30 years.

PURPOSE: This study aims to examine time trends in the ability to correctly identify schizophrenia and major depression within the German general population from 1990 to 2020, as an indicator of changing mental health literacy (MHL). Additionally, we investigated shifts in the use of stigmatizing language. METHODS: Our analysis is based on four waves of representative population surveys in Germany in 1990/1993 (West Germany: N = 2044, East Germany: N = 1563), 2001 (N = 5025), 2011 (N = 2455), and 2020 (N = 3042) using identical methodology. Respondents were presented with an unlabelled case vignette describing a person who exhibited symptoms of either schizophrenia or major depression. Participants were then asked to name the problem described in the vignette using an open-ended question. RESULTS: From 1990/1993 to 2020, correct identification of schizophrenia increased from 18% to 34% and from 27% to 46% for major depression. However, derogatory labels remained constant throughout all survey waves, particularly for schizophrenia (19% in 1990/1993 and 18% in 2020). For depression, more trivializing and potentially devaluing statements were recorded. CONCLUSION: Despite the increasing use of psychiatric terminology among the general population, the persistence of derogatory labels suggests that improved MHL, reflected in higher recognition rates, may not automatically translate into a reduction in stigmatizing language. With depression, a normalization and trivialization of a severe illness could pose new challenges to people with major depression. Dedicated efforts to combat the stigma of severe mental illness are still needed.

Digital clinical empathy in a live chat: multiple findings from a formative qualitative study and usability tests.

BACKGROUND: Clinical empathy is considered a crucial element in patient-centered care. The advent of digital technology in healthcare has introduced new dynamics to empathy which needs to be explored in the context of the technology, particularly within the context of written live chats. Given the growing prevalence of written live chats, this study aimed to explore and evaluate techniques of digital clinical empathy within a familial cancer-focused live chat, focusing on how health professionals can (a) understand, (b) communicate, and (c) act upon users' perspectives and emotional states. METHODS: The study utilized a qualitative approach in two research phases. It examined the expected and implemented techniques and effectiveness of digital clinical empathy in a live chat service, involving semi-structured interviews with health professionals (n = 9), focus group discussions with potential users (n = 42), and two rounds of usability tests between health professionals (n = 9) and users (n = 18). Data were examined using qualitative content analysis. RESULTS: Expected techniques of digital clinical empathy, as articulated by both users and health professionals, involve reciprocal engagement, timely responses, genuine authenticity, and a balance between professionalism and informality, all while going beyond immediate queries to facilitate informed decision-making. Usability tests confirm these complexities and introduce new challenges, such as balancing timely, authentic responses with effective, personalized information management and carefully framed referrals. CONCLUSIONS: The study reveals that the digital realm adds layers of complexity to the practice of clinical empathy. It underscores the importance of ongoing adaptation and suggests that future developments could benefit from a hybrid model that integrates the strengths of both AI and human health professionals to meet evolving user needs and maintain high-quality, empathetic healthcare interactions.

Clarifying the Relationship Between Information Seeking and Avoidance: Longitudinal Analyses of Information Behaviors and Their Normative Influences.

Information seeking and avoidance are relevant behaviors to cope with health crises. While there are various assumptions about their relationship, past research has not yet analyzed their interplay. The present study aims to clarify the relationship between information seeking and avoidance in the course of the COVID-19 pandemic and shed light on whether both behaviors are impacted by seeking- and avoidance-related norms, which are known factors in individuals' health- and risk-related behaviors. Based on a four-wave panel study conducted among German residents (n = 492), we investigated information seeking and avoidance and their normative influences from a longitudinal perspective. Results of random intercept cross-lagged panel models suggest that information seeking and avoidance are distinct, not causally related but correlated concepts. This understanding is supported by the findings that seeking- and avoidance-related norms operate differently for seeking and avoidance. The results add to construct clarification and theory development, but more research is needed to understand the relations between information behaviors.

Self- and surrogate-seeking of information about mental health and illness in Germany.

BACKGROUND: Seeking information on mental health issues - both for oneself and on behalf of others (so-called surrogate-seeking) - is a critical early step in dealing with mental illness and known to impede stigmatizing attitudes and foster help-seeking. Yet, knowledge about mental health tends to be insufficient worldwide. Therefore, it is necessary to better understand the search for mental health information and examine the factors that are positively associated with information-seeking. METHOD: In a face-to-face survey in Germany (N = 1,522), we investigated the factors related to mental health information-seeking. The data was analyzed by means of a logistic regression model, in which we distinguished those searching information for themselves from so-called surrogate seekers, i.e., people who seek information on behalf of someone else. RESULTS: Twenty-six percent of German adults in our sample have already searched for information on mental health, with the majority already having searched for information for others (73% of all seekers). Our findings indicate that individuals' proximity to people with mental health issues, including their own mental health treatment experience (Cramer's V = .429, p < .001), education (Cramer's V = .184, p < .001), and desire for social distance from the affected people (F [1, 1516] = 73.580, p < .001, η2 = .046), play an important role in mental health information-seeking. The patterns of sociodemographic and proximity factors hereby differ between self-seekers and surrogate-seekers. CONCLUSIONS: Our study provides insights into the public's mental health information orientation. The findings may particularly guide strategies to improve mental health awareness and fill knowledge gaps in supporting informed decision-making and reducing stigma. Surrogate seekers appear to be an important and distinctive target group for mental health information provision. Depending on whether one wants to promote surrogate- or self-seeking seekers, different target groups and determinants should be addressed.

Public attitudes towards protecting the human rights of people with mental illness: a scoping review and data from a population trend study in Germany.

The human rights of people with mental illness are constantly threatened. We conduct a scoping review showing how public attitudes towards protecting human rights have so far been examined and providing an overview of our present knowledge of these attitudes, and present novel findings from a trend study in Germany over nine years, reporting attitudes elicited in 2020 and examining whether these attitudes have changed since 2011. Few studies address attitudes towards human rights explicitly, but several studies contain single items on either first generation human rights, mainly concerning involuntary admission, or civil liberties like the right to vote, or second generation human rights, mainly with regard to funding for healthcare, but also for example regarding career choice. Recent data from Germany showed little improvement in attitudes towards protecting human rights over the last decade and particularly high support for restricting job opportunities for people with mental illness. Although generally, most restrictions were supported by a minority of respondents only, both our data and our scoping review indicate substantial support for several restrictions in several countries, showing that public attitudes pose a challenge to the human rights of persons with mental illness. We discuss possible lines of future research.

Changes in continuum beliefs for depression and schizophrenia in the general population 2011-2020: a widening gap.

PURPOSE: The public discourse about mental health and mental illness seems to have become more open over the last decade, giving rise to the hope that symptoms of mental illness have become more relatable. We examine whether continuum beliefs regarding schizophrenia and depression have increased on a population level over a period of 9 years, and whether notions of unfamiliarity and incomprehensibility have decreased. METHODS: In 2011 (n = 2455) and 2020 (n = 3042), two methodologically identical cross-sectional population surveys were conducted in Germany. After the presentation of an unlabeled case vignette depicting someone with schizophrenia or depression, we asked about continuum beliefs, perceived unfamiliarity and perceived incomprehensibility of the person described. RESULTS: Multinomial logit models holding sociodemographic variables fixed at their means for both surveys showed that agreement with continuum beliefs increased in depression from 43 to 46% [change 4%; 95% confidence interval (CI) 0; 8], but decreased in schizophrenia from 26 to 20% (change - 6%, 95% CI - 9; - 3). Unfamiliarity (change - 4%; 95% CI - 7; 0) and incomprehensibility (change - 7%, 95% CI - 10; - 4) decreased for depression, while remaining largely unchanged for schizophrenia. CONCLUSION: An already pronounced gap in the perception of both disorders with regard to continuity of symptom experiences and perceived otherness further widened over the last decade. While the public's increasing familiarity with symptoms of depression might be further aided by using continuum beliefs as part of anti-stigma messages and awareness campaigns, promulgating continuity models for schizophrenia seems more challenging.

Outcomes of Information Seeking and Avoidance Behaviors: Insights from a German Longitudinal Study.

Examining information behaviors is often justified by their consequences but theoretical models of information behaviors have focused on antecedents of seeking and avoidance rather than their outcomes. Therefore, the current study aims to explore the affective, cognitive, and behavioral consequences of information-seeking and avoidance behaviors related to the COVID-19 pandemic. Based on a secondary analysis of a four-wave online survey of a sample of German residents (n = 492), we conducted hybrid models allowing us to differentiate between within-person effects of information behaviors on the outcomes and between-person correlations between information behaviors and outcomes. The findings revealed only single and small effects of information behaviors. Cognitive consequences such as risk perceptions were influenced by information seeking, whereas information seeking and avoidance affected individuals' subjective but not their objective level of knowledge. Neither information seeking nor avoidance impacted affective responses or a variety of behavioral consequences. These results contrast with assumptions that information seeking is per se a desirable health outcome, whereas information avoidance might be a barrier to health prevention and pandemic containment. At least in times of a health crisis, the findings suggest that information behavior might not be the central determinant of various affective, cognitive, and behavioral outcomes.

Media Coverage of Alcohol-Use Disorders in German Newspapers and Magazines: A Topic-Specific Frame Analysis.

Alcohol use disorders (AUD) are pressing social problems. News media play a key role in setting the agenda for the public discourse and framing these problems. They provide people affected and unaffected with health-related information on different facets of the disease and present the topic in various contexts. In doing so, they shape the public opinion and influence behaviors. On the basis of an explorative quantitative content analysis of N = 402 articles published in 2019 in nine German newspapers and magazines, this study provides information on the topic-specific framing with regard to AUD. The results show only scant contextualization of the topic in the German media. This deficiency has particular regard to causal relationships and treatment opportunities, leaving room for interpretation from the audience. The topic-specific framing analysis showed that articles on AUD mostly appear either in the context of celebrities, endorsing favorable presentations of recovered people, or in the context of crime and violence, which goes hand in hand with portraying acutely affected people as perpetrators. Increased news coverage that includes the portrayal of non-famous people who have successfully engaged in alcohol treatment and recovery is necessary.

Health Information Repertoires of Implant Patients: Toward a Deeper Understanding of Multiple Source Use and the Role of Health-Related Motives.

Health information-seeking behavior can be understood as an active and purposeful acquisition of information from selected information sources. It supports patients to cope with medical and health-related uncertainties and enables them to engage in informed decision-making. To obtain health information, patients can turn to a variety of sources, such as going to a physician, exchanging information with their family, or using different Internet sources. Research showed that patients typically use multiple sources to meet their health-related information needs. To attain a holistic and differentiated picture of patients' actual health information behavior, the current study draws on the repertoire approach. We conducted an online survey with 1,105 implant patients and performed a cluster analysis to explore their health information repertoires. To gain a deeper understanding of the practical meaning behind the repertoires, we also considered health-related information motives and socio-structural factors, as well as the implant type (dental, orthopedic, cochlear), to characterize the repertoires. The study revealed seven different health information repertoires of implant patients, varying in their combination of multiple sources used. In addition, group comparisons showed that the repertoires differ significantly regarding socio-structural factors, such as gender, age, and education, as well as implant type. Furthermore, information motives contribute significantly to the differentiation of the repertoires. The results are of high theoretical potential for communication science as well as practical use for strategic health communication.

A Comparison of Women's and Men's Web-Based Information-Seeking Behaviors About Gender-Related Health Information: Web-Based Survey Study of a Stratified German Sample.

BACKGROUND: Gender-sensitive approaches to health communication aim to integrate gender perspectives at all levels of communication, as an individual's biological sex and socially assigned gender identity have an impact on whether and how one acquires what type of health information. Due to the fast and low-cost opportunity to search for a wide range of information, the internet seems to be a particularly suitable place for gender-related health information about diseases of sex-specific organs and diseases where biological differences are associated with different health risks. OBJECTIVE: This study aims to inform gender-related information provision and acquisition in 2 ways. The first objective was to provide a theory-driven analysis of web-based health information-seeking behavior (HISB) regarding gender-related issues. Therefore, the Planned Risk Information Seeking Model (PRISM), which is one of the most integrative models of HISB, was adapted and applied. Second, we asked for gender-specific motivational determinants of gender-related web-based HISB comparing the predictors in the groups of women and men. METHODS: Data from a stratified web-based survey of the German population (N=3000) explained gender-related web-based HISB and influencing patterns comparing women and men. The applicability of PRISM to gender-related web-based HISB was tested using structural equation modeling and a multigroup comparison. RESULTS: The results revealed PRISM as an effective framework for explaining gender-related web-based HISB. The model accounted for 28.8% of the variance in gender-related web-based HISB. Gender-related subjective norms provided the most crucial explanatory power, followed by perceived seeking control. The multigroup comparison revealed differences in the model's explanatory power and the relevance of predictors of gender-related web-based HISB. The share of explained variances of web-based HISB is higher in men than in women. For men, norms were a more relevant promoting factor, whereas web-based HISB of women was more strongly associated with perceived seeking control. CONCLUSIONS: The results are crucial for gender-sensitive targeting strategies and suggest gender-related health information interventions that address gender-related subjective norms. Furthermore, programs (eg, web-based learning units) should be developed and offered to improve individuals' (perceived) abilities to perform web-based searches for health information, as those with higher control beliefs are more likely to access web-based information.

Exploring Functions and Predictors of Digital Health Engagement Among German Internet Users: Survey Study.

BACKGROUND: Digital health engagement may serve many support functions, such as providing access to information; checking or evaluating one's state of health; and tracking, monitoring, or sharing health data. Many digital health engagement behaviors are associated with the potential to reduce inequalities in information and communication. However, initial studies suggest that health inequalities may persist in the digital realm. OBJECTIVE: This study aimed to explore the functions of digital health engagement by describing how frequently respective services are used for a range of purposes and how these purposes can be categorized from the users' perspective. This study also aimed to identify the prerequisites for successfully implementing and using digital health services; therefore, we shed light on the predisposing, enabling, and need factors that may predict digital health engagement for different functions. METHODS: Data were gathered via computer-assisted telephone interviews during the second wave of the German adaption of the Health Information National Trends Survey in 2020 (N=2602). The weighted data set allowed for nationally representative estimates. Our analysis focused on internet users (n=2001). Engagement with digital health services was measured by their reported use for 19 different purposes. Descriptive statistics showed the frequency with which digital health services were used for these purposes. Using a principal component analysis, we identified the underlying functions of these purposes. Using binary logistic regression models, we analyzed which predisposing factors (age and sex), enabling factors (socioeconomic status, health- and information-related self-efficacy, and perceived target efficacy), and need factors (general health status and chronic health condition) can predict the use of the distinguished functions. RESULTS: Digital health engagement was most commonly linked to acquiring information and less frequently to more active or interactive purposes such as sharing health information with other patients or health professionals. Across all purposes, the principal component analysis identified 2 functions. Information-related empowerment comprised items on acquiring health information in various forms, critically assessing one's state of health, and preventing health problems. In total, 66.62% (1333/2001) of internet users engaged in this behavior. Health care-related organization and communication included items on patient-provider communication and organizing health care. It was applied by 52.67% (1054/2001) of internet users. Binary logistic regression models showed that the use of both functions was determined by predisposing factors (female and younger age) and certain enabling factors (higher socioeconomic status) and need factors (having a chronic condition). CONCLUSIONS: Although a large share of German internet users engage with digital health services, predictors show that existing health-related disparities prevail in the digital realm. To make use of the potential of digital health services, fostering digital health literacy at different levels, especially in vulnerable groups, is key.

Understanding Trust Determinants in a Live Chat Service on Familial Cancer: Qualitative Triangulation Study With Focus Groups and Interviews in Germany.

BACKGROUND: In dealing with familial cancer risk, seeking web-based health information can be a coping strategy for different stakeholder groups (ie, patients, relatives, and those suspecting an elevated familial cancer risk). In the vast digital landscape marked by a varied quality of web-based information and evolving technologies, trust emerges as a pivotal factor, guiding the process of health information seeking and interacting with digital health services. This trust formation in health information can be conceptualized as context dependent and multidimensional, involving 3 key dimensions: information seeker (trustor), information provider (trustee), and medium or platform (application). Owing to the rapid changes in the digital context, it is critical to understand how seekers form trust in new services, given the interplay among these different dimensions. An example of such a new service is a live chat operated by physicians for the general public with personalized cancer-related information and a focus on familial cancer risk. OBJECTIVE: To gain a comprehensive picture of trust formation in a cancer-related live chat service, this study investigates the 3 dimensions of trust-trustor, trustee, and application-and their respective relevant characteristics based on a model of trust in web-based health information. In addition, the study aims to compare these characteristics across the 3 different stakeholder groups, with the goal to enhance the service's trustworthiness for each group. METHODS: This qualitative study triangulated the different perspectives of medical cancer advisers, advisers from cancer support groups, and members of the public in interviews and focus group discussions to explore the 3 dimensions of trust-trustor, trustee, and application-and their determinants for a new live chat service for familial cancer risk to be implemented at the German Cancer Information Service. RESULTS: The results indicate that experience with familial cancer risk is the key trustor characteristic to using, and trusting information provided by, the live chat service. The live chat might also be particularly valuable for people from minority groups who have unmet needs from physician-patient interactions. Participants highlighted trustee characteristics such as ability, benevolence, integrity, and humanness (ie, not a chatbot) as pivotal in a trustworthy cancer live chat service. Application-related characteristics, including the reputation of the institution, user-centric design, modern technology, and visual appeal, were also deemed essential. Despite the different backgrounds and sociodemographics of the 3 stakeholder groups, many overlaps were found among the 3 trust dimensions and their respective characteristics. CONCLUSIONS: Trust in a live chat for cancer information is formed by different dimensions and characteristics of trust. This study underscores the importance of understanding trust formation in digital health services and suggests potential enhancements for effective, trustworthy interactions in live chat services (eg, by providing biographies of the human medical experts to differentiate them from artificial intelligence chatbots).

Intentions of Patients With Cancer and Their Relatives to Use a Live Chat on Familial Cancer Risk: Results From a Cross-Sectional Web-Based Survey.

BACKGROUND: An important prerequisite for actively engaging in cancer prevention and early detection measures, which is particularly recommended in cases of familial cancer risk, is the acquisition of information. Although a lot of cancer information is available, not all social groups are equally well reached because information needs and communicative accessibility differ. Previous research has shown that a live chat service provided by health professionals could be an appropriate, low-threshold format to meet individual information needs on sensitive health topics such as familial cancer risk. An established German Cancer Information Service is currently developing such a live chat service. As it is only worthwhile if accepted by the target groups, formative evaluation is essential in the course of the chat service's development and implementation. OBJECTIVE: This study aimed to explore the acceptance of a live chat on familial cancer risk by patients with cancer and their relatives (research question [RQ] 1) and examine the explanatory power of factors associated with their intentions to use such a service (RQ2). Guided by the Extended Unified Theory of Acceptance and Use of Technology (UTAUT2), we examined the explanatory power of the following UTAUT2 factors: performance expectancy, effort expectancy, social influence, facilitating conditions, and habit, supplemented by perceived information insufficiency, perceived susceptibility, perceived severity, and cancer diagnosis as additional factors related to information seeking about familial cancer. METHODS: We conducted a cross-sectional survey via a German web-based access panel in March 2022 that was stratified by age, gender, and education (N=1084). The participants are or have been diagnosed with cancer themselves (n=144) or have relatives who are or have been affected (n=990). All constructs were measured with established scales. To answer RQ1, descriptive data (mean values and distribution) were used. For RQ2, a blockwise multiple linear regression analysis was conducted. RESULTS: Overall, 32.7% of participants were (rather) willing, 28.9% were undecided, and 38.4% were (rather) not willing to use a live chat on familial cancer risk in the future. A multiple linear regression analysis explained 47% of the variance. It revealed that performance expectancy, social influence, habit, perceived susceptibility, and perceived severity were positively associated with the intention to use a live chat on familial cancer risk. Effort expectancy, facilitating conditions, information insufficiency, and cancer diagnosis were not related to usage intentions. CONCLUSIONS: A live chat seems promising for providing information on familial cancer risk. When promoting the service, the personal benefits should be addressed in particular. UTAUT2 is an effective theoretical framework for explaining live chat usage intentions and does not need to be extended in the context of familial cancer risk.

Understanding the Pathway of Cancer Information Seeking: Cancer Information Services as a Supplement to Information from Other Sources.

Cancer information services (CISs) can play an important role within the pathway of cancer information seeking, but so far, this role is not well understood. Callers (n = 6,255) who contacted the largest provider of cancer information in Germany participated in a survey in which they reported their information sources, information level, and needs leading to the call. Persons with prior information from a physician (n = 1,507) were compared to people with prior online information (n = 901) and people with prior information from both sources (n = 2,776). Nearly all callers (96.7%) stated prior sources, while physicians and the Internet were the most frequently reported sources. People, who only talked to a doctor before, are more likely to be a patient and in the disease stages during/after the first treatment or with recurrence than prior Internet users. The two groups do not differ in their prior information level but did differ in their information needs. CISs are an important supplement to other sources, while the information repertoire depends on patients' stages during the cancer journey. Specific characteristics and needs of callers with different prior information sources help to individualize the service of CISs and similar providers.

[A gendered perspective of information behaviors, its drivers, and barriers : Results of an online survey of a sample stratified for the German population]. / Ein geschlechterspezifischer Blick auf das gesundheitsbezogene Informationshandeln, seine Treiber und Barrieren : Ergebnisse einer Online-Befragung einer für die deutsche Bevölkerung stratifizierten Stichprobe.

BACKGROUND: The gender perspective is an essential level of effective health communication approaches. Against the background of the gender perspective as an essential level of effective health communication approaches, we focus on health-related information behaviors. Complementary to information seeking, information avoidance is included. Both forms of information behavior are described in gender-specific ways, and their predictors are identified using a resource-centered approach covering the individual's health, empowerment, involvement, and social support. METHOD: An online survey of a sample stratified for the German population (N = 3000) was conducted. The two modes of information behavior as well as their theoretically derived predictors were assessed. In addition to descriptive analyses, blockwise regression analyses were used to identify gender-specific predictors of information seeking and avoidance. RESULTS: Information seeking occurs more frequently than information avoidance. Both differ only slightly between men and women and showed the strongest correlations with the respondents' involvement. For information seeking, coping resources are also a significant predictor, while information avoidance is associated with psychological well-being and social support. Similar patterns of association emerge across genders. CONCLUSION: Across genders, it is evident that health communication measures should strengthen the involvement of the population and their coping resources to promote information seeking and counteract information avoidance. Additionally, the findings revealed that avoiders should be more focused as one of the main target groups of health communication.

Explaining cancer information avoidance comparing people with and without cancer experience in the family.

OBJECTIVES: Cancer information avoidance (CIA) serves as a barrier to preventive efforts. To learn how to combat this barrier, we aim to examine predictors of CIA in populations with and without cancer experience in the family, which are addressed differently in cancer prevention, according to specific informational barriers. METHODS: A subsample of people with and without cancer in the family (n = 2,757) of an online survey with a sample stratified for the German population by age, gender, education, and region was conducted via an online access panel. The survey instrument was adapted from the Health Information National Trends Survey. Separate stepwise regression analyses were conducted. RESULTS: Only a comparatively small proportion of the variance in CIA was explained by the predictors, ranging from R2  = .148 for people without cancer experience to R2  = .180 for participants with cancer experience in their family. Across the groups, the findings showed that people who were fatalistic about the risk of cancer, less health literate, who perceived less social pressure to be informed, and were less trusting in information sources more often avoided cancer information. CONCLUSIONS: Our findings identify relevant target groups to be addressed and barriers to be removed for cancer communication efforts. Adequate information provision can be supported by programs for fostering health literacy and social network diffusion strategies.

OnkoRiskNET: a multicenter, interdisciplinary, telemedicine-based model to improve care for patients with a genetic tumor risk syndrome.

BACKGROUND: Genetic tumor risk syndromes are responsible for at least five to ten percent of the 4 million cases of cancer diagnosed in Europe every year. Currently, the care of oncological patients suffers from a lack of specialists in medical genetics and also a lack of access to genetic care in rural areas and structured care pathways between oncologists and medical geneticists. As a result, genetic tumor risk syndromes are underdiagnosed with potentially fatal consequences for patients and their families. METHODS: The OnkoRiskNET study is supported by a grant from the Federal Joint Committee of the Federal Republic of Germany. The study will include 2,000 oncological index patients from oncology practices in Lower Saxony and Saxony after the start of the study in July 2021. Randomization is carried out by means of a stepped wedge design at the level of the practices. Patients either go through routine care or the new form of care with structured cooperation between medical geneticists and oncologists, case management and the use of telemedical genetic counseling. Using a mixed-methods approach, the following parameters will be evaluated in the control and intervention group: (1) Conducted genetic counseling sessions by patients with suspected tumor risk syndrome and their first degree relatives; (2) Patient satisfaction and psychological distress after genetic counseling and testing; (3) Factors influencing the acceptance and experience of telemedical genetic counseling; (4) Satisfaction of oncologists and medical genetics with the structured pathway; (5) Cost efficiency of the new form of care. DISCUSSION: OnkoRiskNET aims to close the gap in care through the formation of a cooperation network between practicing oncologists and specialists in medical genetics and the use of telemedical genetic counseling, thereby, increasing the diagnostic rate in genetic tumor risk syndromes and serving as a model for future genetic care in Germany. TRIAL REGISTRATION: Trial was registered on 01.12.2021 in the German Clinical Trial Register ( https://trialsearch.who.int/ ) with the DRKS-ID:  DRKS00026679 . TITLE: Cooperation network for the provision of local care for patients and families with a genetic tumour risk syndrome. Trial acronym: OnkoRiskNET. Protocol version 1.1.

Expanding the Health Information National Trends Survey Research Program Internationally to Examine Global Health Communication Trends: Comparing Health Information Seeking Behaviors in the U.S. and Germany.

The Health Information National Trends Survey (HINTS) is a well-established U.S.-based research program administered by the National Cancer Institute to track the public access to and use of health information. This paper introduces a German research initiative, part of the International Studies to Investigate Global Health Information Trends (INSIGHTS) research consortium. This adaptation of the HINTS is important for initiating analyses of global health communication practices and comparing health information seeking behaviors (HISB) across nations to pinpoint potentials and challenges of health information provision and contribute to a deeper understanding of socio-contextual determinants of HISB. First cross-country comparisons revealed that the share of residents seeking for health information is high in the U.S. (80%) and Germany (74%), but different primary sources are used. Whereas a clear majority of U.S. residents chose the Internet to gather health information (74.9%), Germans most often turn to health professionals (48.0%). Socio-structural and health(care)-related predictors were found to contribute to the explanation of HISB in both countries, whereas information-related predictors were only relevant in Germany. The results indicate the need to engage in patient-provider communication to initiate HISB and to improve the access to information for residents with lower socio-economic backgrounds.

Correlates of the perceived quality of patient-provider communication among German adults.

BACKGROUND: Since a higher perceived quality of patient-provider communication is known to be associated with improved health outcomes, it is essential to analyze determinants influencing patients' perceived quality of patient-provider communication. Due to the limited knowledge about patient-related influencing factors of quality perception available so far, the objective of this study is to explore and assess determinants of the perceived quality of patient-provider communication with regards to sociodemographic, health-related, healthcare-specific and information-related factors. METHODS: Linear regression of cross-sectional data from the first wave of Health Information National Trends Survey Germany (n = 2902) was conducted. Independent variables were sociodemographic, health-, healthcare- and information-related factors; the dependent variable was the perceived quality of patient-provider communication. RESULTS: Results show that age, migration background, the perceived quality of healthcare, health-related self-efficacy and trust in health information from health professionals are significantly associated with the perceived quality of patient-provider communication. CONCLUSIONS: Sociodemographic, healthcare- and health information-related factors influence the perceived quality of patient-provider communication. In particular, patients having a migration background and patients reporting low self-efficacy showed significant lower levels of their perceived patient-provider communication quality. With the aim to improve quality issues, patients of both target groups should be empowered and supported.

Explaining Online Information Seeking Behaviors in People With Different Health Statuses: German Representative Cross-sectional Survey.

BACKGROUND: Worldwide, the internet is an increasingly important channel for health information. Many theories have been applied in research on online health information seeking behaviors (HISBs), with each model integrating a different set of predictors; thus, a common understanding of the predictors of (online) HISB is still missing. Another shortcoming of the theories explaining (online) HISB is that most existing models, so far, focus on very specific health contexts such as cancer. Therefore, the assumptions of the Planned Risk Information Seeking Model (PRISM) as the latest integrative model are applied to study online HISB, because this model identifies the general cognitive and sociopsychological factors that explain health information seeking intention. We shift away from single diseases and explore cross-thematic patterns of online HISB intention and compare predictors concerning different health statuses as it can be assumed that groups of people perceiving themselves as ill or healthy will differ concerning their drivers of online HISB. Considering the specifics of online HISB and variation in individual context factors is key for the development of generalizable theories. OBJECTIVE: The objective of our study was to contribute to the development of the concept of online HISB in 2 areas. First, this study aimed to explore individual-level predictors of individuals' online HISB intention by applying the postulates of PRISM. Second, we compared relevant predictors of online HISB in groups of people with different health statuses to identify cross-thematic central patterns of online HISB. METHODS: Data from a representative sample of German internet users (n=822) served to explain online HISB intentions and influencing patterns in different groups of people. The applicability of the PRISM to online HISB intention was tested by structural equation modeling and multigroup comparison. RESULTS: Our results revealed PRISM to be an effective framework for explaining online HISB intention. For online HISB, attitudes toward seeking health information online provided the most important explanatory power followed by risk perceptions and affective risk responses. The multigroup comparison revealed differences both regarding the explanatory power of the model and the relevance of predictors of online HISB. The online HISB intention could be better explained for people facing a health threat, suggesting that the predictors adopted from PRISM were more suitable to explain a problem-driven type of information-seeking behavior. CONCLUSIONS: Our findings indicate that attitudes toward seeking health information online and risk perceptions are of central importance for online HISB across different health-conditional contexts. Predictors such as self-efficacy and perceived knowledge insufficiency play a context-dependent role-they are more influential when individuals are facing health threats and the search for health information is of higher personal relevance and urgency. These findings can be understood as the first step to develop a generalized theory of online HISB.