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.

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.

Top 10 research priorities in colorectal cancer: results from the Colorectal Cancer Priority-Setting Partnership.

BACKGROUND: Colorectal cancer (CRC) is the third most frequent cause of cancer death in the word. Which aspects of research into CRC should be accorded the highest priority remains unclear, because relevant stakeholders, such as patients, nurses, and physicians, played hardly any part in the development of research projects. The goal in forming the CRC Priority-Setting Partnership (PSP) was to bring all relevant stakeholders together to identify and prioritize unresolved research questions regarding the diagnosis, treatment, and follow-up of CRC. METHODS: The CRC PSP worked in cooperation with the British James Lind Alliance. An initial nationwide survey was conducted, and evidence uncertainties were collected, categorized, summarized, and compared with available evidence from the literature. The as-yet unresolved questions were (provisionally) ranked in a second national wide survey, and at a concluding consensus workshop all stakeholders came together to finalize the rankings in a nominal group process and compile a top 10 list. RESULTS: In the first survey (34% patients, 51% healthcare professionals, 15% unknown), 1102 submissions were made. After exclusion of duplicates and previously resolved questions, 66 topics were then ranked in the second survey (56% patients, 39% healthcare professionals, 5% unknown). This interim ranking process revealed distinct differences between relatives and healthcare professionals. The final top 10 list compiled at the consensus workshop covers a wide area of research topics. CONCLUSION: All relevant stakeholders in the CRC PSP worked together to identify and prioritize the top 10 evidence uncertainties. The results give researchers and funding bodies the opportunity to address the most patient-relevant research projects. It is the first detailed description of a PSP in Germany, and the first PSP on CRC care worldwide.

[Knowledge facilitates health: the "Fit in Health" program for strengthening the health literacy of students]. / Wissen schafft Gesundheit: Das Programm "Fit in Gesundheitsfragen" zur Stärkung der Gesundheitskompetenz von Schülerinnen und Schülern.

In Germany, more than half of the population has low health literacy. These people have difficulties in finding and classifying health-related information and adapting it to their own situation. Among them are many young people, highlighting the importance of interventions early in life to promote health literacy.This is where the "Fit in Health" program of the Health Information Services of the Helmholtz Munich Research Center and the German Cancer Research Center starts. The objective is to contribute to the promotion of different dimensions of health literacy among children and adolescents. To this end, innovative training formats for teachers and teaching materials for students at secondary levels I and II are being designed and evaluated. The major diseases cancer and diabetes mellitus are used as models to provide basic knowledge on their pathogenesis, prevention, treatment, and research. In addition, information about the structures of the healthcare system and materials to strengthen health literacy are provided. An accompanying evaluation collects indicator data on coverage and acceptance of the measures.Since 2018, the program has published 46 teaching materials and three course readers with background knowledge for teachers. Furthermore, 50 training courses have been held, with approximately 1600 teachers and multipliers taking part in face-to-face and online events by the end of 2021. More than 90% of the participants gave the respective events very good or good evaluations. Around 80% of the participants said they would like to include the topics taught in their lessons. Further expansion of the offers is planned. Testing of a set of materials with respect to the gain of health literacy in a sample of students is currently being prepared.

Preferred and perceived participation roles of oncological patients in medical decision-making: Results of a survey among users of the German Cancer Information Service.

BACKGROUND: Cancer patients are facing a variety of treatment and other disease-related decisions. This study aims to provide insights into preferred and perceived participation roles in decision-making among patients with diverse tumors using the German Cancer Information Service (CIS). METHODS: Patients' decision-making preferences and experiences were assessed as a part of a cross-sectional survey among CIS users. An adapted version of the Control Preferences Scale (CPS) was used to assess preferred and perceived participation roles in eight different areas of medical decision-making (e.g., choice of medication, termination of treatment). Logistic regression analyses were applied to explore preference matching and to analyze associations between participation roles and sociodemographic variables. Moreover, we examined preferences and perceptions of participation roles across different decision situations. RESULTS: In the final sample (N = 1566, 64.9% female, mean age = 61.6), almost half of the patients (47.1%) preferred to take a collaborative role in decisions on treatment methods, whereas 36.3% preferred an active role and 15.9% a passive role. Collaborative role preferences frequently (40.7%) coincided with experiencing a passive role and predicted a reduced chance of a match between preferences and experiences (OR = 0.57, p = .001). A higher level of education was associated with a lower chance of preferring and perceiving a passive role (OR = 0.85, p < .01). Compared with men, women had increased odds of preferring (OR = 1.45, p < .05) and of actually taking (OR = 2.04, p < .001) a passive role in medical encounters. Preferred participation roles regarding treatment methods were highly correlated with preferences in all other decision areas (r > .50, p < .001) except decisions about family involvement. CONCLUSIONS: The study reveals well-known deficits in the fulfilment of patients' collaborative role preferences across different areas of medical decision-making in a sample of CIS users characterized by high information-seeking behavior. Participation roles were not only influenced by the patients' level of education but also by their gender. The gender effect may be more pronounced than previous studies suggest. These effects should be considered in the development of interventions to promote shared decision-making. Additionally, study results indicate that preferences for participation in decisions about treatment methods, as assessed by the CPS, can be generalized to other areas of medical decision-making.

The COVID-19 Pandemic and Cancer Patients in Germany: Impact on Treatment, Follow-Up Care and Psychological Burden.

In response to the ongoing coronavirus disease 2019 (COVID-19) pandemic, governments imposed various measures to decrease the rate of disease spread, and health care policy makers prioritized resource allocation to accommodate COVID-19 patients. We conducted a cross-sectional online survey in Germany (July 2020-June 2021) to assess the frequency of changes to cancer care among cancer patients and to explore the psychological impact of the pandemic writ large. Cancer patients who contacted the Cancer Information Service (Krebsinformationsdienst, KID) of the German Cancer Research Center (Deutsches Krebsforschungszentrum, DKFZ) via email were invited to complete an online questionnaire, capturing demographics, cancer specifics (e.g., type, disease phase, primary place of treatment, etc.), and any changes to their medical, follow-up, psycho-oncological or nursing care. General level of psychological distress was measured using the Hospital Anxiety and Depression Scale (HADS) along with face-validated items regarding worries and social isolation specific to the pandemic. In total, 13% of 621 patients reported a change to their treatment or care plan. Of those patients with changes, the majority of changes were made to follow-up care after treatment (56%), to monitoring during treatment (29%) and to psychological counseling (20%). Of the overall sample, more than half of patients (55%) reported symptoms of anxiety and 39% reported symptoms of depression. Patients with a change in cancer care were more likely to report symptoms of depression than those with no change (AOR: 2.18; 95% CI: 1.26-3.76). Concern about the pandemic affecting the quality of health care was a predictor of both anxiety (AOR: 2.76; 95% CI: 1.75-4.35) and depression (AOR: 2.15; 95% CI: 1.43-3.23). Results showed that the majority of cancer patients in our study did not experience a change in their cancer care. However, the level of anxiety and psycho-social burden of cancer patients during the pandemic was high throughout the study period. Our findings underscore the need for health care services and policy makers to assess and to attend cancer patients' medical needs, with added emphasis on patients' psychological and social well-being. This applies particularly in situations where the healthcare system is strained and prioritization is necessary.

[Trends in cancer information services over 25 years : An analysis of inquiries from patients and relatives made to the Cancer Information Service of the German Cancer Research Center from 1992 to 2016]. / Langzeittrends beim Krebsinformationsdienst (KID) des Deutschen Krebsforschungszentrums (DKFZ) : Eine Analyse der Anfragen von Patientinnen und Patienten sowie Angehörigen von 1992 bis 2016.

BACKGROUND: Cancer information services (CISs) are a valuable source of evidence-based information. Previous studies in the field of CISs often investigate only short periods of time. However, there is a need for long-term analyses to identify changes in the use of CISs. OBJECTIVES: The purpose of this study was to analyze trends in the inquiries of patients and surrogate seekers to a CIS. METHOD: We conducted a secondary data analysis of the inquiry records of the German CIS (Krebsinformationsdienst, KID) hosted by the German Cancer Research Center from 1992 until 2016 (N = 545,070). Trends in the number of inquiries were described using the whole sample, while the description of further characteristics is based on a sample (n = 55,046) of patients, their family members, and friends. RESULTS: The inquiries increased in the period examined (1992: 11,344 inquiries; 2016: 34,869 inquiries). Since 2005, a greater share of patients (between 52 and 60%) than surrogate seekers have been contacting the CIS. The mean age of both self-seeking and supported patients increased from under 55 years between 1992 and 2000 up to over 60 years in the year 2016. Breast cancer is at all times the most frequently inquired cancer type (patients: n = 11,319, 39%; surrogate seekers: n = 4173, 17%). Even after the implementation of e­mail as an additional communication channel, the majority of inquirers still prefer contact by phone (between 80 and 98%). CONCLUSIONS: Changes in the utilization of a CIS over time are discussed against the background of structural changes, such as shifts in prevalence rates, family structures, or media environments.

Demographic and cancer-related differences between self-seeking patients and supported patients: Analysis of cancer information-service data.

OBJECTIVE: Surrogate information seeking is quite common, and several studies have presented data on caregivers, family members, and friends who seek health information on the Internet or from a cancer-information service (CIS) on behalf of cancer patients. However, these studies provide little information about the patients who are supported by surrogate seekers. Therefore, this study analyzed demographic and cancer-related differences, including diverse informational needs, between self-seeking patients and patients who benefited from surrogate seekers (ie, caregivers, family, or friends) requesting information on their behalf. METHODS: We conducted a retrospective audit of phone and e-mail inquiries to a German CIS between January and December 2016 from self-seeking patients (n = 13 723) and surrogate information seekers, as well as the corresponding supported patients (n = 6696). RESULTS: Supported patients were more likely to be males (P < 0.001), older than self-seeking patients (P < 0.001), and older than the corresponding surrogate seekers (P < 0.001). They were also more likely to be in the diagnostic or palliative stage (P < 0.001) and were less likely to suffer from breast cancer or prostate cancer (P < 0.001) than self-seeking patients. There were significant differences in the CIS requests of self-seekers and surrogate seekers. CONCLUSIONS: The results point to different support needs of self-seekers and surrogate seekers. Thus, surrogate seekers and their corresponding supported patients should be seen as a separate target group to self-seeking patients, with the former requiring informational and emotional support on diverging topics and at different disease stages.

Cancer ­ an overview. / Krebs ­ ein Überblick.

Cancer is characterized by proliferation of cells that have managed to evade central endogenous control mechanisms. Cancers are grouped according to their organ or tissue of origin, but increasingly also based on molecular characteristics of the respective cancer cells. Due to the rapid technological advances of the last years, it is now possible to analyze the molecular makeup of different cancer types in detail within short time periods. The accumulating knowledge about development and progression of cancer can be used to develop more precise diagnostics and more effective and/or less toxic cancer therapies. In the long run, the goal is to offer to every cancer patient a therapeutic regimen that is tailored to his individual disease and situation in an optimal way.

Specific N-terminal mutations in the human androgen receptor induce cytotoxicity.

Polyglutamine (polyQ) stretch amplification in different proteins causes neurodegenerative disease. These proteins form intracellular aggregates thought to be cytotoxic but differ in pathology and tissue specificity. Here, we demonstrate that specific sequences outside the polyQ stretch of the human androgen receptor contribute to polyQ pathology. An exchange of two N-terminal serine phosphorylation residues to alanine in the wild type androgen receptor (ARQ22dm) resulted in cytoplasmic accumulation and increased early hormone-dependent aggregation of the receptor. In a Drosophila model, the ARQ22dm was cytotoxic, and developing larvae expressing this receptor showed behavioral abnormalities and severely impaired locomotion. In contrast, the same double mutation in an androgen receptor with an extended polyQ stretch was less toxic. The response of the receptors to inhibitors of polyglutamine toxicity is altered by the amino acid exchanges suggesting that careful consideration is needed in the choice of potential therapies of disorders involving toxic polyQ species.

Multiplexed lipid dip-pen nanolithography on subcellular scales for the templating of functional proteins and cell culture.

Molecular patterning processes taking place in biological systems are challenging to study in vivo because of their dynamic behavior, subcellular size, and high degree of complexity. In vitro patterning of biomolecules using nanolithography allows simplification of the processes and detailed study of the dynamic interactions. Parallel dip-pen nanolithography (DPN) is uniquely capable of integrating functional biomolecules on subcellular length scales due to its constructive nature, high resolution, and high throughput. Phospholipids are particularly well suited as inks for DPN since a variety of different functional lipids can be readily patterned in parallel. Here DPN is used to spatially pattern multicomponent micro- and nanostructured supported lipid membranes and multilayers that are fluid and contain various amounts of biotin and/or nitrilotriacetic acid functional groups. The patterns are characterized by fluorescence microscopy and photoemission electron microscopy. Selective adsorption of functionalized or recombinant proteins based on streptavidin or histidine-tag coupling enables the semisynthetic fabrication of model peripheral membrane bound proteins. The biomimetic membrane patterns formed in this way are then used as substrates for cell culture, as demonstrated by the selective adhesion and activation of T-cells.