Cross-disciplinary advance care planning in oncology and palliative care amidst a pandemic: a best practice implementation project.

INTRODUCTION: Advance care planning (ACP) ensures that patients receive medical care aligned with their values, goals, and preferences, especially regarding end-of-life decisions in serious chronic illnesses. OBJECTIVE: This project aimed to introduce and promote evidence-based ACP in oncology and palliative care at a midsized hospital near Berlin, Germany, during the COVID-19 pandemic. METHODS: This project was guided by the JBI Evidence Implementation Framework and used a mixed methods audit cycle. A baseline audit was conducted using qualitative interviews and workshops with representatives from all the health care disciplines involved in oncology and palliative care at the hospital. The findings were compared with eight best practice recommendations. Targeted strategies aimed at the key stakeholders involved in ACP practice were then implemented. Finally, a semi-quantitative questionnaire was used in a follow-up audit with the same participants as in the baseline audit. RESULTS: The baseline audit revealed a high level of familiarity with the concept of ACP. However, there was a lack of a uniformly accepted definition and understanding of ACP among the health care professionals, leading to a lack of coordination in task distribution. The follow-up audit revealed improvements with regard to education and training in ACP (Criterion 1: 50% to 100%) and organizational support to facilitate ACP conversations (Criterion 3: 87.5% to 100%). Other audit criteria compliance rates remained unchanged. CONCLUSION: Clinical education and team-based process analysis can facilitate ACP implementation across disciplines in oncology and palliative care facilities. However, the project did not succeed in implementing lasting changes in clinical processes and best practice ACP due to the COVID-19 pandemic. Such an endeavor would demand considerable resources and time, both of which were constrained during the pandemic. SPANISH ABSTRACT: http://links.lww.com/IJEBH/A236.

Diagnostic Accuracy of a Mobile AI-Based Symptom Checker and a Web-Based Self-Referral Tool in Rheumatology: Multicenter Randomized Controlled Trial.

BACKGROUND: The diagnosis of inflammatory rheumatic diseases (IRDs) is often delayed due to unspecific symptoms and a shortage of rheumatologists. Digital diagnostic decision support systems (DDSSs) have the potential to expedite diagnosis and help patients navigate the health care system more efficiently. OBJECTIVE: The aim of this study was to assess the diagnostic accuracy of a mobile artificial intelligence (AI)-based symptom checker (Ada) and a web-based self-referral tool (Rheport) regarding IRDs. METHODS: A prospective, multicenter, open-label, crossover randomized controlled trial was conducted with patients newly presenting to 3 rheumatology centers. Participants were randomly assigned to complete a symptom assessment using either Ada or Rheport. The primary outcome was the correct identification of IRDs by the DDSSs, defined as the presence of any IRD in the list of suggested diagnoses by Ada or achieving a prespecified threshold score with Rheport. The gold standard was the diagnosis made by rheumatologists. RESULTS: A total of 600 patients were included, among whom 214 (35.7%) were diagnosed with an IRD. Most frequent IRD was rheumatoid arthritis with 69 (11.5%) patients. Rheport's disease suggestion and Ada's top 1 (D1) and top 5 (D5) disease suggestions demonstrated overall diagnostic accuracies of 52%, 63%, and 58%, respectively, for IRDs. Rheport showed a sensitivity of 62% and a specificity of 47% for IRDs. Ada's D1 and D5 disease suggestions showed a sensitivity of 52% and 66%, respectively, and a specificity of 68% and 54%, respectively, concerning IRDs. Ada's diagnostic accuracy regarding individual diagnoses was heterogenous, and Ada performed considerably better in identifying rheumatoid arthritis in comparison to other diagnoses (D1: 42%; D5: 64%). The Cohen κ statistic of Rheport for agreement on any rheumatic disease diagnosis with Ada D1 was 0.15 (95% CI 0.08-0.18) and with Ada D5 was 0.08 (95% CI 0.00-0.16), indicating poor agreement for the presence of any rheumatic disease between the 2 DDSSs. CONCLUSIONS: To our knowledge, this is the largest comparative DDSS trial with actual use of DDSSs by patients. The diagnostic accuracies of both DDSSs for IRDs were not promising in this high-prevalence patient population. DDSSs may lead to a misuse of scarce health care resources. Our results underscore the need for stringent regulation and drastic improvements to ensure the safety and efficacy of DDSSs. TRIAL REGISTRATION: German Register of Clinical Trials DRKS00017642; https://drks.de/search/en/trial/DRKS00017642.

Psychiatrists' perceptions of conditions and consequences associated with the implementation of open notes: qualitative investigation.

OBJECTIVE: In a growing list of countries, patients are granted access to their clinical notes ("open notes") as part of their online record access. Especially in the field of mental health, open notes remain controversial with some clinicians perceiving open notes as a tool for improving therapeutic outcomes by increasing patient involvement, while others fear that patients might experience psychological distress and perceived stigmatization, particularly when reading clinicians' notes. More research is needed to optimize the benefits and mitigate the risks. METHODS: Using a qualitative research design, we conducted semi-structured interviews with psychiatrists practicing in Germany, to explore what conditions they believe need to be in place to ensure successful implementation of open notes in psychiatric practice as well as expected subsequent changes to their workload and treatment outcomes. Data were analyzed using thematic analysis. RESULTS: We interviewed 18 psychiatrists; interviewees believed four key conditions needed to be in place prior to implementation of open notes including careful consideration of (1) diagnoses and symptom severity, (2) the availability of additional time for writing clinical notes and discussing them with patients, (3) available resources and system compatibility, and (4) legal and data protection aspects. As a result of introducing open notes, interviewees expected changes in documentation, treatment processes, and doctor-physician interaction. While open notes were expected to improve transparency and trust, participants anticipated negative unintended consequences including the risk of deteriorating therapeutic relationships due to note access-related misunderstandings and conflicts. CONCLUSION: Psychiatrists practiced in Germany where open notes have not yet been established as part of the healthcare data infrastructure. Interviewees were supportive of open notes but had some reservations. They found open notes to be generally beneficial but anticipated effects to vary depending on patient characteristics. Clear guidelines for managing access, time constraints, usability, and privacy are crucial. Open notes were perceived to increase transparency and patient involvement but were also believed to raise issues of stigmatization and conflicts.

"Let's put it this way: you can't really live without it" - digital technologies in routine palliative care delivery: an explorative qualitative study with patients and their family caregivers in Germany.

BACKGROUND: Despite ongoing efforts to integrate palliative care into the German healthcare system, challenges persist, particularly in areas where infrastructure does not fully support digital technologies (DT). The increasing importance of digital technology (DT) in palliative care delivery presents both opportunities and challenges. OBJECTIVE: This study aimed to explore the perspectives and preferences of palliative care patients and their family caregivers regarding the use of DT in care delivery. METHODS: An exploratory qualitative study was conducted using semi-structured interviews with palliative care patients and their family caregivers across various settings. Participants were selected through gatekeeper-supported purposive sampling. Interviews were analysed using structured qualitative content analysis. RESULTS: Nineteen interviews were conducted.Three themes emerged: (1) Application of DTs in palliative care; (2) Potential of DTs; (3) Barriers to the use of DTs. Key findings highlighted the preference for real-time communication using DTs that participants are familiar with. Participants reported limited perceived value for digital transformation in the presence of in-person care. The study identified requirements for DT development and use in palliative care, including the need for direct and immediate functionality, efficiency in healthcare professional (HCP) work, and continuous access to services. CONCLUSION: The findings highlight a demonstrate the importance of familiarity with DTs and real-time access for patients and their families. While DT can enhance palliative care efficiency and accessibility, its integration must complement, not replace, in-person interaction in palliative care. As DTs continue to grow in scope and use in palliative care, maintaining continued user engagement is essential to optimise their adoption and ensure they benefit patients and their caregivers.

Systems for electronic documentation and sharing of advance care planning preferences: a scoping review.

Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (https://osf.io/xnrg3). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.

"The Simpler, the Better." A Qualitative Study on Digital Health Transformation in Early Adopter Rheumatology Outpatient Clinics.

Workforce shortage and the increasing burden of rheumatic and musculoskeletal diseases lead to extreme time constraints in rheumatology outpatient care. Digital services promise to facilitate care by relieving employees and unleash new capacities. This study aims to explore the perspectives of early adopter health care professionals (HCP) on digital transformation in outpatient rheumatology. In-depth qualitative interviews were conducted with rheumatology nurses and physicians in 3 German rheumatology outpatient clinics, each characterized by an advanced level of digital adaption. Qualitative data were subsequently analyzed using deductive-inductive qualitative content analysis. Interviews with 11 rheumatology nurses and 5 rheumatologists were completed. Three key themes emerged from the qualitative analysis: (i) Digital transformation of care; (ii) impact of digital transformation on health care delivery; and (iii) perceived drivers of successful digitalization. The interviews revealed that digital technologies are widely used throughout the complete patient pathway. Digitalization enables more continuity and flexibility in rheumatology care. Patient information can be electronically obtained in a standardized manner prior to planned visits, enabling an informed consultation and more time for in-depth patient discussion. Although digitalization restructures work, it can also increase the current workload. Improved accessibility for patient calls leads to more work for HCP. Important drivers of successful digital technology implementation are low-threshold and interoperable services, a medical team that is interested and educated in eHealth, and comprehensive patient information and onboarding. Digital transformation is increasingly redefining rheumatology care. While accelerating communication and workflows, improved service accessibility leads to more work for HCP.

Evaluation of a hybrid telehealth care pathway for patients with axial spondyloarthritis including self-sampling at home: results of a longitudinal proof-of-concept mixed-methods study (TeleSpactive).

Patients with axial spondyloarthritis (axSpA) require close monitoring to achieve the goal of sustained disease remission. Telehealth can facilitate continuous care while relieving scarce healthcare resources. In a mixed-methods proof-of-concept study, we investigated a hybrid telehealth care axSpA pathway in patients with stable disease over 6 months. Patients used a medical app to document disease activity (BASDAI and PtGA bi-weekly, flare questionnaire weekly). To enable a remote ASDAS-CRP (TELE-ASDAS-CRP), patients used a capillary self-sampling device at home. Monitoring results were discussed and a decision was reached via shared decision-making whether a pre-planned 3-month on-site appointment (T3) was necessary. Ten patients completed the study, and eight patients also completed additional telephone interviews. Questionnaire adherence was high; BASDAI (82.3%), flares (74.8%) and all patients successfully completed the TELE-ASDAS-CRP for the T3 evaluation. At T3, 9/10 patients were in remission or low disease activity and all patients declined the offer of an optional T3 on-site appointment. Patient acceptance of all study components was high with a net promoter score (NPS) of +50% (mean NPS 8.8 ± 1.5) for self-sampling, +70% (mean NPS 9.0 ± 1.6) for the electronic questionnaires and +90% for the T3 teleconsultation (mean NPS 9.7 ± 0.6). In interviews, patients reported benefits such as a better overview of their condition, ease of use of telehealth tools, greater autonomy, and, most importantly, travel time savings. To our knowledge, this is the first study to investigate a hybrid approach to follow-up axSpA patients including self-sampling. The positive results observed in this scalable proof-of-concept study warrant a larger confirmatory study.

Characterising trends in the initiation, timing, and completion of recommended summary plan for emergency care and treatment (ReSPECT) plans: Retrospective analysis of routine data from a large UK hospital trust.

AIM: To assess patient socio-demographic and disease characteristics associated with the initiation, timing, and completion of emergency care and treatment planning in a large UK-based hospital trust. METHODS: Secondary retrospective analysis of data across 32 months extracted from digitally stored Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans within the electronic health record system of an acute hospital trust in England, UK. RESULTS: Data analysed from ReSPECT plans (n = 23,729), indicate an increase in the proportion of admissions having a plan created from 4.2% in January 2019 to 6.9% in August 2021 (mean = 8.1%). Forms were completed a median of 41 days before death (a median of 58 days for patients with capacity, and 21 days for patients without capacity). Do not attempt cardiopulmonary resuscitation was more likely to be recorded for patients lacking capacity, with increasing age (notably for patients aged over 74 years), being female and the presence of multiple disease groups. 'Do not attempt cardiopulmonary resuscitation' was less likely to be recorded for patients having ethnicity recorded as Asian or Asian British and Black or Black British compared to White. Having a preferred place of death recorded as 'hospital' led to a five-fold increase in the likelihood of dying in hospital. CONCLUSION: Variation in the initiation, timing, and completion of ReSPECT plans was identified by applying an evaluation framework. Digital storage of ReSPECT plan data presents opportunities for assessing trends and completion of the ReSPECT planning process and benchmarking across sites. Further research is required to monitor and understand any inequity in the implementation of the ReSPECT process in routine care.

Acceptance of Telemedicine by Specialists and General Practitioners in Cardiology Care: Cross-Sectional Survey Study.

BACKGROUND: In the coming years, telemedicine will play a key role in health care. Especially in rural areas with weak infrastructure, telemedicine could be crucial to providing adequate and personalized medical care. OBJECTIVE: We investigated the acceptance and preferences of telemedicine among cardiologists, internists, and general practitioners. In addition, we aimed to identify knowledge, explore factors that influence the decision to adopt or reject this technology, and create starting points for demand-oriented further research. METHODS: We conducted a web-based survey between May 2021 and February 2022. The 34-item questionnaire covered a wide range of questions regarding knowledge, acceptance, and use of telemedicine in cardiology care. Participants (cardiologists, internists, and general practitioners) were contacted through their professional email addresses, through a QR code published in a regional health journal, and through X (formerly known as Twitter). After exclusion of questionnaires with missed values, multidimensional scaling and k-means clustering were performed. Participants were divided into 3 clusters (C1, C2, and C3) based on their attitudes toward telecardiology. C1 uses telemedicine for personal health and clinical practice; C2 shows reluctance; C3 uses telemedicine mainly clinically. RESULTS: We contacted 929 physicians. Of those 12.1% (112/929) completed the questionnaires. Participants were 56% male (54/97), 29% female (28/97), and 2% (2/97) diverse (median age 50 years). About 16% (18/112) of the respondents currently use telemedicine daily, 14.3% (16/112) 3-4 times a week, and 43% (48/112) did not use telemedicine at all. Overall, 35.1% (34/97) rated their knowledge of telemedicine as very good or good. Most of the respondents replied that telemedicine could support cardiology care in monitoring of blood pressure and electrocardiograms (57/97, 58.8%, both), consultation (57/97, 58.8%), and extending follow-up time (59/97, 60.8%). Reported barriers to implementation were mostly administration (26/97, 26.8%), inadequate reimbursement (25/97, 25.8%), and the purchase of technology equipment (23/97, 23.7%). Attitudes toward telemedicine in clinical practice were closely related to the number of patients being treated per annual quarter: C3 (median 1350, IQR 1000-1500) versus C1 (median 750, IQR 300-1200) and C2 (median 500, IQR 105-825). The differences between clinical caseloads of C1-C3 members were significant: C1 versus C2 (P=.03), C1 versus C3 (P=.02), and C2 versus C3 (P<.001). Most participants (87/112, 77.7%) would like to expand telemedicine approaches in the future. In the field of cardiology, the participants reported a high suitability of telemedicine. The willingness to train in telemedicine is high to very high for > 50% of the participants. CONCLUSIONS: Our results indicate generally moderate use but positive attitudes toward telemedicine among participating physicians with a higher clinical caseload. The lack of a structural framework seems to be a barrier to the effective implementation of telecardiology.

Human-Written vs AI-Generated Texts in Orthopedic Academic Literature: Comparative Qualitative Analysis.

BACKGROUND: As large language models (LLMs) are becoming increasingly integrated into different aspects of health care, questions about the implications for medical academic literature have begun to emerge. Key aspects such as authenticity in academic writing are at stake with artificial intelligence (AI) generating highly linguistically accurate and grammatically sound texts. OBJECTIVE: The objective of this study is to compare human-written with AI-generated scientific literature in orthopedics and sports medicine. METHODS: Five original abstracts were selected from the PubMed database. These abstracts were subsequently rewritten with the assistance of 2 LLMs with different degrees of proficiency. Subsequently, researchers with varying degrees of expertise and with different areas of specialization were asked to rank the abstracts according to linguistic and methodological parameters. Finally, researchers had to classify the articles as AI generated or human written. RESULTS: Neither the researchers nor the AI-detection software could successfully identify the AI-generated texts. Furthermore, the criteria previously suggested in the literature did not correlate with whether the researchers deemed a text to be AI generated or whether they judged the article correctly based on these parameters. CONCLUSIONS: The primary finding of this study was that researchers were unable to distinguish between LLM-generated and human-written texts. However, due to the small sample size, it is not possible to generalize the results of this study. As is the case with any tool used in academic research, the potential to cause harm can be mitigated by relying on the transparency and integrity of the researchers. With scientific integrity at stake, further research with a similar study design should be conducted to determine the magnitude of this issue.

Prediction of the acceptance of telemedicine among rheumatic patients: a machine learning-powered secondary analysis of German survey data.

Telemedicine (TM) has augmented healthcare by enabling remote consultations, diagnosis, treatment, and monitoring of patients, thereby improving healthcare access and patient outcomes. However, successful adoption of TM depends on user acceptance, which is influenced by technical, socioeconomic, and health-related factors. Leveraging machine learning (ML) to accurately predict these adoption factors can greatly contribute to the effective utilization of TM in healthcare. The objective of the study was to compare 12 ML algorithms for predicting willingness to use TM (TM try) among patients with rheumatic and musculoskeletal diseases (RMDs) and identify key contributing features. We conducted a secondary analysis of RMD patient data from a German nationwide cross-sectional survey. Twelve ML algorithms, including logistic regression, random forest, extreme gradient boosting (XGBoost), and neural network (deep learning) were tested on a subset of the dataset, with the inclusion of only RMD patients who answered "yes" or "no" to TM try. Nested cross-validation was used for each model. The best-performing model was selected based on area under the receiver operator characteristic (AUROC). For the best-performing model, a multinomial/multiclass ML approach was undertaken with the consideration of the three following classes: "yes", "no", "do not know/not answered". Both one-vs-one and one-vs-rest strategies were considered. The feature importance was investigated using Shapley additive explanation (SHAP). A total of 438 RMD patients were included, with 26.5% of them willing to try TM, 40.6% not willing, and 32.9% undecided (missing answer or "do not know answer"). This dataset was used to train and test ML models. The mean accuracy of the 12 ML models ranged from 0.69 to 0.83, while the mean AUROC ranged from 0.79 to 0.90. The XGBoost model produced better results compared with the other models, with a sensitivity of 70%, specificity of 91% and positive predictive value of 84%. The most important predictors of TM try were the possibility that TM services were offered by a rheumatologist, prior TM knowledge, age, self-reported health status, Internet access at home and type of RMD diseases. For instance, for the yes vs. no classification, not wishing that TM services were offered by a rheumatologist, self-reporting a bad health status and being aged 60-69 years directed the model toward not wanting to try TM. By contrast, having Internet access at home and wishing that TM services were offered by a rheumatologist directed toward TM try. Our findings have significant implications for primary care, in particular for healthcare professionals aiming to implement TM effectively in their clinical routine. By understanding the key factors influencing patients' acceptance of TM, such as their expressed desire for TM services provided by a rheumatologist, self-reported health status, availability of home Internet access, and age, healthcare professionals can tailor their strategies to maximize the adoption and utilization of TM, ultimately improving healthcare outcomes for RMD patients. Our findings are of high interest for both clinical and medical teaching practice to fit changing health needs caused by the growing number of complex and chronically ill patients.

Pre-assessment of patients with suspected axial spondyloarthritis combining student-led clinics and telemedicine: a qualitative study.

OBJECTIVE: Patients referred to rheumatologists are currently facing months of inefficient waiting time due to the increasing demand and rising workforce shortage. We piloted a pre-assessment of patients with suspected axial spondyloarthritis (axSpA) combining student-led clinics and telemedicine (symptom assessment, symptom monitoring and at-home capillary self-sampling) to improve access to rheumatology care. The aim of this study was to explore (1) current challenges accessing axSpA care and (2) patients' first-hand experiences. METHODS: Embedded within a clinical trial, this study was based on qualitative interviews with patients with suspected axSpA (n = 20). Data was analysed via qualitative content analysis. RESULTS: Student-led clinics were perceived as high-quality care, comparable to conventional rheumatologist-led visits. Patients expressed that their interactions with the students instilled a sense of trust. History-taking and examinations were perceived as comprehensive and meticulous. Telehealth tools were seen as empowering, offering immediate and continuous access to symptom assessment at home. Patients reported a lack of specificity of the electronic questionnaires, impeding accurate responses. Patients requested a comments area to supplement questionnaire responses. Some patients reported receiving help to complete the blood collection. CONCLUSION: Patients' access to rheumatology care is becoming increasingly burdensome. Pre-assessment including student-led clinics and telemedicine was highly accepted by patients. Patient interviews provided valuable in-depth feedback to improve the piloted patient pathway.

Does the second opinion directive in Germany reach the patient? A parallel-convergent mixed-methods study.

BACKGROUND: A Second Opinion Directive (SOD) was introduced in Germany in December 2018 for elective surgeries such as hysterectomy, tonsillotomy, tonsillectomy, and shoulder arthroscopy. The aim of the SOD is to avoid surgeries which are not medically induced and to support patients in their decision-making process. A physician who indicates an SOD-relevant procedure must inform the patient about the SOD and its specifications. At this time, it is not clear whether physicians provide information about the SOD to patients and whether and how the SOD is implemented in daily practice. Furthermore, nothing is known about how patients react when they are told that they have the right to seek a second opinion according to the SOD. METHODS: To assess this, we undertook a parallel-convergent mixed-methods study with a qualitative and quantitative phase. Qualitative data were analysed by structured qualitative content analysis and survey data were analysed descriptively. RESULTS: 26 interviews were conducted with patients for whom one of the above-mentioned surgeries was indicated. In parallel, a questionnaire survey with 102 patients was conducted. The results show that the SOD is not implemented in Germany for the selected indications because patients were not informed as intended. At the same time, when the right to obtain a second opinion was explained, it seemed to have a positive effect on the physician-patient relationship from patients` perspective. CONCLUSIONS: It is possible that there is a lack of information for physicians, which in turn leads to an information deficit for patients. Better information for physicians might be part of the solution, but a negative attitude towards the SOD might also result in the low education rate. Therefore, in addition, potential patients or even the general population should be better informed about the possibility of obtaining a second opinion.

Non-Adherence with Physiotherapeutic Rehabilitation-A Cross-Cultural Adaption of Compliance Parameters into German.

BACKGROUND: Compliance with rehabilitative physiotherapeutic measures leads to an improvement in outcomes in patients suffering from a variety of musculoskeletal conditions. To date, a tool for assessing the parameters that lead to non-adherence to physical therapy does not exist in the German language. The objective of this paper is to cross-culturally adapt a non-compliance questionnaire to German. METHODS: In reference to the "Guidelines for the Process of Cross-Cultural Adaption of Self-Reported Measures", the questionnaire was translated into German followed by a back-translation into the original language. An expert committee met and refined the pre-final version. A preliminary version was handed out to patients for evaluation of the quality of the resulting German version. RESULTS: After the forward- and back-translation of the questionnaire, some discrepancies were discovered between the translators on the one hand and between the back-translations and the original document on the other. The statistical analysis showed satisfactory results regarding the quality of the questionnaire. CONCLUSION: The translation and adaption of the items proved to have a high degree of reliability. The German version will be made available for German-speaking researchers and used for evaluating a mobile-application-based physical therapy regimen by the authors of the paper.

Factors Associated With Telemedicine Use Among Patients With Rheumatic and Musculoskeletal Disease: Secondary Analysis of Data From a German Nationwide Survey.

BACKGROUND: Previous studies have demonstrated telemedicine (TM) to be an effective tool to complement rheumatology care and address workforce shortage. With the outbreak of the COVID-19 pandemic, TM experienced a massive upswing. A previous study revealed that physicians' willingness to use TM and actual use of TM are closely connected to their knowledge of TM. However, it remains unclear which factors are associated with patients' motivation to use TM. OBJECTIVE: This study aims to identify the factors that determine patients' willingness to try TM (TM try) and their wish that their rheumatologists offer TM services (TM wish). METHODS: We conducted a secondary analysis of data from a German nationwide cross-sectional survey among patients with rheumatic and musculoskeletal disease (RMD). Bayesian univariate and multivariate logistic regression analyses were applied to the data to determine which factors were associated with TM try and TM wish. The predictor variables (covariates) studied individually included sociodemographic factors (eg, age and sex) and health characteristics (eg, disease type and health status). All the variables positively or negatively associated with TM try or TM wish in the univariate analyses were then considered for the Bayesian model averaging analysis after a selection based on the variance inflation factor (≤2.5). All the analyses were stratified by sex. RESULTS: Of the total 102 variables, 59 (57.8%) and 45 (44.1%) variables were found to be positively or negatively associated (region of practical equivalence ≤5%) with TM try and TM wish, respectively. A total of 16 and 8 determinant factors were identified for TM try and TM wish, respectively. Wishing that TM services were offered by rheumatologists, having internet access at home, residing 5 to 10 km away from the general practitioner's office, owning an electronic device, and being aged 40 to 60 years were among the factors positively associated with TM try and TM wish. By contrast, not yet being diagnosed with an RMD, having no prior knowledge of TM, having a bad health status, living in a rural area, not documenting one's health status, not owning an electronic device, and being aged 60 to 80 years were negatively associated with TM try and TM wish. CONCLUSIONS: Our results suggest that health status, knowledge, age, and access to technical equipment and infrastructure influence the motivation of patients with RMD to use telehealth services. In particular, older patients with RMD living in rural areas, who could likely benefit from using TM, are currently not motivated to use TM and seem to need additional TM support.

Digitally supported shared decision-making and treat-to-target in rheumatology: a qualitative study embedded in a multicenter randomized controlled trial.

Patient-reported outcomes (PRO) represent a cornerstone in the management of patients with rheumatoid arthritis (RA). However, PRO are currently recorded mainly on paper and only during on-site appointments. Electronic PRO (ePRO) enable continuous remote monitoring and could improve shared decision-making (SDM) and implementation of a treat-to-target (T2T) approach. This study aims to investigate patient and physician experiences, perceived drawbacks and benefits of using an ePRO web-app (ABATON RA) to digitally support SDM and T2T. A qualitative study embedded in a multicenter randomized controlled trial (RCT) consisting of interviews with RA patients and physicians that were subsequently analyzed using deductive-inductive qualitative content analysis. Between August 2021 and May 2022, interviews with ten RA patients and five physicians were completed. Three key themes emerged in the analysis: (i) App user experiences; (ii) perceived drawbacks of app-supported rheumatology care; and (iii) perceived benefits of app-supported rheumatology care. Continuous ePRO collection and a high level of standardization strained some RA patients. Certain ePRO seemed outdated and were hard to understand. Patients and physicians appreciated having an improved overview of disease activity, capturing disease flares and continuous remote monitoring. Paper- and time-saving were associated with using ePRO. Physicians feared to become too focused on ePRO data, stressed the lack of ePRO monitoring reimbursement and app interoperability. For RA patients and physicians, benefits seemed to outweigh observed drawbacks of the digitally supported SDM using ePRO. The software was easy to use and could lead to a better understanding of the individual disease course, resource allocation and treatment of rheumatoid arthritis.

At-home blood self-sampling in rheumatology: a qualitative study with patients and health care professionals.

BACKGROUND: The goal of the study was to investigate patients' with systemic rheumatic diseases and healthcare professionals' experiences and preferences regarding self-sampling of capillary blood in rheumatology care. METHODS: Patients performed a supervised and consecutive unsupervised capillary blood self-collection using an upper arm based device. Subsequently, patients (n = 15) and their attending health care professionals (n = 5) participated in an explorative, qualitative study using problem-centered, telephone interviews. Interview data were analyzed using structured qualitative content analysis. RESULTS: Interviewed patients reported easy application and high usability. Patients and health care professionals alike reported time and cost savings, increased independence and flexibility, improved monitoring and reduction of risk of infection during Covid-19 as benefits. Reported drawbacks include limited blood volume, limited usability in case of functional restrictions, and environmental concerns. Older, immobile patients with long journeys to traditional blood collection sites and young patients with little time to spare for traditional blood collection appointments could be user groups, likely to benefit from self-sampling services. CONCLUSIONS: At-home blood self-sampling could effectively complement current rheumatology telehealth care. Appropriateness and value of this service needs to be carefully discussed with patients on an individual basis. TRIAL REGISTRATION: WHO International Clinical Trials Registry: DRKS00024925. Registered on 15/04/2021.

Becoming a Guest: On Proximity and Distance in Mental Health Home Treatment.

Mental health home treatment is a service where patients with severe mental illnesses are visited by a multiprofessional psychiatric care team at their homes. In Germany, inpatient-equivalent home treatment as a specialized form of home treatment has been offered by hospitals since 2018. In its early stage, the shift of care activities out of the hospital toward the patient's home opened up a new set of problems and blurred the existing boundaries. This ethnographic study follows two home treatment teams and provides an in-depth description of their work. The findings are presented by three themes from our data analysis: (i) closeness and familiarity; (ii) bridging the distance; and (iii) tensions of proximity and distance. We then discuss the findings with the guiding lens of Becoming a Guest, which refers to the ambiguity of proximity and distance. The contribution for computer-supported cooperative work (CSCW) is twofold; on the one hand, we provide a detailed account of mental health home treatment, and on the other hand, we outline a conceptual model that helps to describe and analyze similar cases. We conclude the paper with directions for further research.

Digital technologies in routine palliative care delivery: an exploratory qualitative study with health care professionals in Germany.

OBJECTIVE: To explore health care professionals' (HCPs) perspectives, experiences and preferences towards digital technology use in routine palliative care delivery. METHODS: HCPs (n = 19) purposively selected from a sample of settings that reflect routine palliative care delivery (i.e. specialized outpatient palliative care, inpatient palliative care, inpatient hospice care in both rural and urban areas of the German states of Brandenburg and Berlin) participated in an explorative, qualitative study using semi-structured interviews. Interview data were analyzed using structured qualitative content analysis. RESULTS: Digital technologies are widely used in routine palliative care and are well accepted by HCPs. Central functions of digital technologies as experienced in palliative care are coordination of work processes, patient-centered care, and communication. Especially in outpatient care, they facilitate overcoming spatial and temporal distances. HCPs attribute various benefits to digital technologies that contribute to better coordinated, faster, more responsive, and overall more effective palliative care. Simultaneously, participants preferred technology as an enhancement not replacement of care delivery. HCPs fear that digital technologies, if overused, will contribute to dehumanization and thus significantly reduce the quality of palliative care. CONCLUSION: Digital technology is already an essential part of routine palliative care delivery. While generally perceived as useful by HCPs, digital technologies are considered as having limitations and carrying risks. Hence, their use and consequences must be carefully considered, as they should discreetly complement but not replace human interaction in palliative care delivery.

Evaluation of the use of video consultation in German rheumatology care before and during the COVID-19 pandemic.

Background: The COVID-19 pandemic led to transformations in healthcare infrastructures and increased use of (innovative) telemedicine (TM) tools. Comparison of the use of video consultation (VC) in rheumatology in the pre-pandemic period and during the pandemic might allow for evaluating this new form of consultancy in healthcare due to changing conditions and possibilities. Materials and methods: Cross-sectional nationwide online survey among German rheumatologists and rheumatologists in training between March and May 2021 promoted by newsletters and Twitter posts. Results: Results refer to 205 participants. The majority was male (59%), older than 40 years (90%). Thirty-eight percent stated to have employed TM before ("digital users"), 27% were using VC as part of their TM expertise ("VC-users"), 10% stated to have experience with TM but not VC ("TM-users"). Those negating the use of any TM (62%) were designated as "digital non-users." TM-Knowledge was self-rated as 4 [median on a Likert Scale 1 (very high) to 6 (very low)] with a significant difference between digital users (VC-user 2.7 ± 1.2, TM-user 3.2 ± 1.1) and digital non-users (4.4 ± 1.3). The reported significant increase of VC use during the lockdown periods and between the lockdowns compared to the pre-pandemic phase was regarded as a proxy for VC acceptance in the pandemic. Reasons for VC non-use were administrative/technical efforts (21%), lack of technical equipment (15%), time constraints (12%), time required for individual VC sessions (12%), inadequate reimbursement (11%), lack of demand from patients (11%), data security concerns (9%), poor internet connection (8%), and lack of scientific evaluation/evidence (5%). Physicians considered the following clinical situations to be particularly suitable for VC: follow-up visits (VC-user 79%, TM-user 62%, digital non-user 47%), emergency consultations (VC-user 20%, TM-user 33%, digital non-user 20%), and patients presenting for the first time (VC-user 11%, TM-user 19%, digital non-user 8%). Conclusion: Even though the pandemic situation, with social distancing and several lockdowns, provides an ideal environment for the implementation of new remote care forms as VC, its use and acceptance remained comparatively low due to multiple reasons. This analysis may help identify hurdles in employing innovative digital care models for rheumatologic healthcare.