Background Chronic heart failure (HF) is associated with high morbidity and mortality, necessitating well-coordinated, guideline-based care. In XXX, Germany, a regional HF care network based on cross-sector collaboration between a university heart centre, general practitioners, cardiologists, and hospitals was implemented. This study examined patient-reported outcomes and experiences within the network. Methods A non-interventional, exploratory pre-post study was conducted as part of routine care. HF-Patients referred from network partners to the university heart centre were invited to participate. Participants completed the Kansas City Cardiomyopathy Questionnaire (KCCQ-23) at baseline (T1) and after 6 months (T2). At T2, a brief, self-developed questionnaire assessed the perceived network-effects on care coordination. In addition, semi-structured telephone interviews were conducted with a subsample of patients. Quantitative data were analysed descriptively and using paired t-tests, while interviews were analysed using qualitative content analysis. Results Seventy-five patients (74.7% male, mean age 65 years) were enrolled, of whom 72 completed the KCCQ at T1 and 40 at T2. Mean scores across all KCCQ domains indicated a moderate to good health-related quality of life at both time points, with small, non-significant improvements observed over six months (e.g., mean clinical summary score T1: 63.69, SD: 25.08, n = 72; T2: 71.15, SD: 23.79, n = 40, p = 0.16). Higher NYHA class and older age were associated with poorer KCCQ scores. Women reported more symptoms and a worse clinical status at baseline. Most respondents at T2 perceived the care process as well coordinated. Ten qualitative interviews revealed high acceptance of the network, perceived benefits of having a direct contact person, and better information, but also some burdens. Most patients considered the role of HF nurses as central contacts valuable. Conclusions In this regional HF network, health-related quality of life remained stable at a moderate to good level over six months, while patients reported high satisfaction and perceived improvements in coordination and information flow. These results suggest that a cross-sectoral HF network is acceptable and useful from a patient perspective. However, there is a need to strengthen communication about the network, clarify responsibilities, and incorporate patient-specific needs, such as more flexible appointment times, to further enhance patient-centred care.

Patient-reported outcome and experience measures (PROMs and PREMs) are increasingly acknowledged as vital instruments for assessing the quality of care for cardiovascular diseases (CVD). These measures include validated and non-validated questionnaires, interview guides, and workshops, which differ in terms of their structure, reliability, and application. Currently, there is no overview of which patient-reported outcomes and experiences are measured in CVD research and care, and there is limited consensus on how PROMs and PREMs are selected and applied. A scoping review was conducted in accordance with the PRISMA extension for scoping reviews, with the aim of systematically identifying and analysing studies that report on the use of PROMs and PREMs in CVD. Literature searches were performed in PubMed and ClinicalTrials.gov for studies published before April 2024. Studies assessing patients with heart diseases (ICD-10: I20–I25; I34–I37; I42; I46–I49; I50) using conventional or digital measures to evaluate care quality from the patient’s perspective were included. Studies focusing on CVDs stemming from neurological complications, rheumatic disease, birth defects, and peripheral artery disease were excluded. The same applies to studies using non-validated PROMs. Data analysis was conducted using qualitative content analysis. Of the 5,489 records identified, 390 publications were included for full-text analysis. More than a third of these were observational studies (n = 168; 43

Background Heart failure (HF) is a significant global health challenge, requiring innovative management strategies like eHealth. However, the success of eHealth in managing HF heavily relies on patient adherence, an area currently not sufficiently investigated despite its critical role in ensuring the effectiveness of this approach. Objective This review was initiated to gather evidence on adherence to eHealth devices among patients with HF. The goal was to survey the current state of adherence, pinpoint factors that promote successful engagement, and identify gaps needing further research. Methods A scoping review was conducted to gather quantitative data on eHealth engagement from relevant clinical HF studies indexed in PubMed, CINAHL, and PsycINFO up to February 2025. Descriptive characteristics of the publications were extracted, and generalized mixed model analyses were used to identify eHealth characteristics affecting patient adherence. Results Our analysis included 70 studies, primarily using noninvasive eHealth interventions with wearables (n=51), followed by wearables only (n=8), noninvasive eHealth interventions without wearables (n=6), invasive devices (n=3), and telephone support (n=2). The median number of patients per study was 49 (IQR 20‐139), and the median follow-up duration was 180 (IQR 84‐360) days. Variability in reporting and definitions of eHealth adherence was noted. In total, 20 studies assessed adherence trends, with 13 noting a decline, 6 observing no change, and 1 reporting an increase over time. Factors influencing adherence were explored in 29 studies; 7 indicated higher adherence with increasing patient age, 2 showed a negative correlation, and 9 detected no age-related differences. No gender differences were found in the 10 publications that reported on gender, and 9 studies found no association between adherence and the New York Heart Association classification, while 1 noted higher adherence in patients with more severe symptoms. In 35 (50%) studies, adherence was quantified as the percentage of mean days the intervention was used, yielding a median adherence rate of 78% (IQR 61%‐86%; range 31%‐98%). No significant correlations were found between adherence rates and the number of eHealth device users, type of intervention, follow-up duration, number of parameters monitored, or data collection frequency. Conclusions Reporting and definitions of patient adherence in HF studies are incomplete and inconsistent. Trends indicate a decrease in eHealth use over time. Customizing devices to meet patient needs may help mitigate this issue. Future research should offer a more detailed description of adherence to pinpoint factors that enhance patient adherence with eHealth technologies.

INTRODUCTION:Cardiovascular disease (CVD) represents a public health burden, with high prevalence and significant morbidity and mortality. Although evidence-based interventions exist, there is a need for more individualised care. The European project Individualised care from early risk of cardiovascular disease to established heart failure (iCARE4CVD) aims to personalise CVD prevention and treatment. Participatory health research, which actively involves patients in the planning, implementation and evaluation of projects, plays a crucial role here. However, patient participation is often unsuccessful due to the lack of a representative patient sample who is involved throughout the project's duration, has knowledge of the project and can contribute their experience. METHODS AND ANALYSIS:Participative Research for Individualised Care in Cardiovascular Diseases is a non-interventional, non-randomised, multicentre mixed-methods study. The aim is to incorporate patients' insights into several key activities within iCARE4CVD by establishing country-specific patient panels in Belgium, Germany, Ireland and the UK. The primary objective is to identify patients' preferences, experiences, requirements and needs for better diagnosis, treatment and self-care of CVD. Therefore, 10-12 patients across the CVD spectrum, from early risk to established CVD and heart failure, will be included in each country (40-48 in total). Over 3.5 years, patient panel members are required to complete four tasks: (1) identification of meaningful Patient-Reported Outcome and Experiences Measures, (2) development of a motivational model to increase adherence, (3) feedback on CVD care processes and (4) usability testing of new digital tools developed within iCARE4CVD. These tasks comprise eight activities in the form of paper-based or digital exercises, telephone surveys, written surveys and in-person focus groups. The results will be continuously incorporated into iCARE4CVD. ETHICS AND DISSEMINATION:This study received ethical approval by the Ethics Committee at the Faculty of Medicine of RWTH Aachen University (EK 24-172) and St. Vincent's University Hospital (RS24-027), Research Ethics Committee. In Geel and Belfast, positive ethics approval is pending. All participants will provide written informed consent prior to enrolment in the study and participation in the first patient panel task. Results will be published in peer-reviewed journals and presented at scientific conferences. TRIAL REGISTRATION NUMBER:DRKS00034899. PROTOCOL VERSION:V2.1, 6 June 2024.

Introduction: The integration of Patient-Reported Experience Measures (PREM) alongside traditional clinical outcomes is crucial for improving quality of care. Although PREMs are frequently measured in inpatient treatment settings, they are rarely employed in digitally supported care processes or longitudinal assessment of care pathways. Methods: To gain an overview of PREMs used to cover patients’ experiences with digitally supported care processes in heart failure (HF), a scoping review was conducted in Medline. Results: Out of 538 publications, 29 were identified that focus on PREMs in digitally supported care processes across 9 unspecific and 14 disease-specific groups, with 5 manuscripts focusing on HF. PREMs were mostly assessed using self-developed, study-specific questionnaires lacking standardization and validity. In total, 9 PREM dimensions and 25 sub-dimensions were identified. This included care delivery, privacy, physician-patient relationship, involvement, administration, information, knowledge, technology, and experiences in general. Conclusion: The findings suggest that the relevance of different dimensions assessed depends largely on the type of care rather than the underlying chronic disease.

Background Heart failure (HF) is a chronic disease characterized by high mortality and healthcare expenditures. Digital health solutions, including mobile health applications (apps), offer opportunities to enhance patients’ self-care and quality of life. This qualitative study aimed to explore expectations, experiences, and usage behaviour of HF-patients regarding a self-care app ( DoctorME app). Methods Semi-structured interviews were conducted at 2-3 weeks (initial: n = 38), and 4–6 months (post: n = 45) of app use across four European countries. Most patients were male (initial: 84%; post: 78%), aged 60–69 years (initial and post: 29%), with mild HF symptoms. Interviews were transcribed, pseudonymised, and analysed using qualitative content analysis. Results Five key themes were identified: 1) expectations , 2) perceived usability and benefit, 3) usage behaviour and experiences, 4) self-care, and 5) social influences. Patients expected and valued continuous monitoring of vital signs and weight, early detection of deterioration, and quick feedback. The app was considered user-friendly, with most patients using it as recommended (eight times per month). Those reporting improved self-care attributed it to increased awareness and a sense of security. Patients with established self-care routines did not perceive any additional benefit. Patients’ perceptions on the impact of healthcare professionals’ and relatives opinions on app use were divided. Conclusions User-friendliness, continuous monitoring, rapid feedback, and e-learning modules are crucial for integrating self-care apps into daily HF care. While technical reliability and individualisation may enhance long-term use, most HF patients considered the app as a complement to, not a replacement for, professional healthcare guidance.

Durch die Weiterentwicklung telemedizinischer Strukturen im deutschen Gesundheitswesen gewinnt das telekardiologische Monitoring zunehmend an Bedeutung, um eine ambulante, lückenlose und bedarfsgerechte Versorgung zu gewährleisten. Anhand der nationalen Qualitätssicherungsmaßnahme „DOQUVIDE – Dokumentation der Qualität bei der Erhebung von Vitalparametern durch implantierte Devices“ wird ein Ausschnitt der Versorgungsrealität von Patient*innen mit telekardiologischen Aggregaten in Deutschland abgebildet. DOQUVIDE ist ein Messinstrument zur Erfassung der Versorgungsrealität ambulant telekardiologisch betreuter Patient*innen mit implantierten Schrittmacher‑/ICD-/CRT-P-/CRT-D-Devices und Ereignisrekordern. DOQUVIDE erfasst kardiale Ereignisse, telemedizinisch gewonnene Vitalparameter und das Prozedere nach Ereignismeldung. In 74 Praxen/Kliniken in 14 Bundesländern wurden im Jahr 2022 6678 Patient*innen telemedizinisch betreut; 937 wurden neu eingeschlossen. Diese waren durchschnittlich 77,8 Jahre alt mit mehrheitlich NYHA-Klasse II (62,6

As telemedical structures continues to be developed in the German healthcare system, remote monitoring is becoming increasingly important to ensure comprehensive, outpatient, and tailored care. The national quality assurance measure "DOQUVIDE-Documentation of quality in the assessment of vital parameters by implanted devices" is used to provide insight into everyday care for patients with telemedicine-enabled devices in Germany.

BACKGROUND:As telemedical structures continues to be developed in the German healthcare system, remote monitoring is becoming increasingly important to ensure comprehensive, outpatient, and tailored care. The national quality assurance measure "DOQUVIDE-Documentation of quality in the assessment of vital parameters by implanted devices" is used to provide insight into everyday care for patients with telemedicine-enabled devices in Germany. METHODS:DOQUVIDE is a measuring instrument for recording outpatient remote monitoring for patients with implanted pacemaker, implantable cardioverter defibrillator (ICD), cardiac resynchronization therapy with a pacemaker (CRT-P), CRT defibrillator (CRT-D) devices and event recorder. DOQUVIDE records telemedically measured vital signs as well as cardiac events and the associated procedures initiated by cardiologists using standardized forms. RESULTS:In 74 practices/clinics in 14 federal states, 6687 patients received telemedical care in 2022; 937 were newly enrolled. These (60% male) were on average 77.8 years old, mainly with New York Heart Association (NYHA) class II (62.6%). A total of 5801 electronic records were generated as a result of telecardiology events, of which 3590 were due to pathological atrial fibrillation and 1812 due to ventricular high-frequency episodes. 295 events were triggered by event recorders and 95 by device therapies. The main measures taken were telephone contacts or outpatient visits. CONCLUSION:Remote monitoring has become a reality in German healthcare. Standardized processes and the establishment of quality assurance measures enable the definition of common quality standards and the identification of the potential for further development and simplify implementation in day-to-day care for practices.

Background In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. Methods A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. Results The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. Conclusion Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills.

AbstractManagement of information systems can be divided into strategic, tactical, and operational management.Strategic management of information systems deals with the information processing of a healthcare facility as a whole. It comprises the planning of the information system’s architecture and of the organization of information management. The tasks of strategic management are planning an information system and its architecture, directing its establishment and its operation, and monitoring its development and operation with respect to the planned objectives. The strategic information management plan represents the long-term planning of the information system of a healthcare facility.Tactical management of information systems deals with particular functions, application components, or physical data processing systems that are introduced, removed, or changed. Usually, these activities are done in the form of projects.Operational management of information systems is responsible for operating the components of the information system. It ensures the smooth operation of the systems in accordance with the strategic information management plan of the healthcare facility.IT governance deals with the organizational structures for decision-making in the management of information systems. Typical organizational structures include the role of a chief information officer who focuses on the strategic management of information systems, an information management board, and a department of information management in charge of the strategic, tactical, and operational management.Management of information systems must find a balance between often conflicting goals, for example, between homogeneity and heterogeneity of the information system architecture or between functional leanness and functional redundancy.

AbstractHealth information systems can be described at three layers: The domain layer describing entity types and functions, the logical tool layer describing application components, and the physical tool layer. Data can be classified into personal and non-personal data and into standardized and non-standardized data.The architectures of an information system can be characterized by the number of databases, the number of application systems, the number of application software products and vendors, and the communication pattern.Technical interoperability describes the ability of application systems to send or receive data. Syntactic interoperability comprises the ability to use predefined message structures. Semantic interoperability means the ability to exchange and process meaningful messages. Process interoperability addresses whether application systems can cooperate. Interoperability standards support one or more aspects of interoperability.Integrating application systems leads to integrated health information systems. Data integration is achieved when data that have been recorded once in one application system are made available in other application systems. Semantic integration is achieved when application systems actually use the same system of concepts. User interface integration is guaranteed when different application systems organize their user interfaces in a unified way. Context integration is achieved when context is preserved when switching application systems. Feature integration is achieved when software features are implemented only once. Process integration is guaranteed when business processes are supported by cooperating application systems.Several integration technologies such as transaction management, communication servers, and open platforms support integrity and integration in heterogeneous health information systems.

Zusammenfassung Herzinsuffizienz (HI) zählt zu den häufigsten chronischen Erkrankungen in Deutschland und geht mit erheblichen gesellschaftlichen und finanziellen Belastungen einher. Die steigende Anzahl an HI-Patienten mündet in einem Ungleichgewicht zwischen Bedarf an und zur Verfügung stehenden Ressourcen. KI hat das Potenzial, sowohl Ärzte in ihrem medizinischen Handeln als auch Patienten im Umgang mit ihrer Erkrankung zu unterstützen. Sie kann als Partner für Ärzte und Patienten fungieren, indem sie bei der Entscheidungsfindung unterstützt sowie die Effizienz und Produktivität der Ärzte steigert. Gleichzeitig erweitert sie das Wissen der Patienten, stärkt den eigenverantwortlichen Umgang mit der HI und unterstützt Verhaltensanpassungen. Weiterhin kann der überlegte Einsatz von KI die Arzt-Patienten-Beziehung stärken. Allerdings zeigt sich auch weiterer Forschungsbedarf, um Lösungen weiterzuentwickeln, Effektivität und Nutzen in der Gesundheitsversorgung aufzuzeigen und Akzeptanz zu schaffen.

AbstractA common terminology is needed when dealing with information systems. Health information systems, as socio-technical subsystems of a healthcare setting, compriss data, information, and knowledge processes as well as the associated actors. They support information and knowledge logistics.When dealing with health information systems and their architecture, we distinguish between concepts such as entities and entity types, computer-based and non-computer-based application components supporting functions, and physical data processing systems. Electronic health records (EHR) are parts of health information systems that collect patient health data from different health care settings. A patient record is the collection of a patient’s health data from a certain facility.Management of health information systems includes planning, directing, and monitoring tasks. The three-layer graph-based metamodel (3LGM2) is a metamodel that supports the management of health information systems. It describes the components of health information system architectures and their relationships among each other at three layers. It consists of the domain layer to describe functions and entity types, the logical tool layer to describe application components, and the physical tool layer to describe physical tools, as well as the inter-layer relationships between the three layers.

Heart failure (HF) has become one of the most common chronic diseases in Germany with major social and financial burdens. Due to the increasing number of HF patients, there is an imbalance between the needs and the available resources. AI has the potential to support both physicians in their daily care and patients in dealing with their disease thus allowing for a more efficient use of resources. AI can act as a valuable partner for physicians and patients by assisting in decision-making and increasing physician efficiency and productivity. At the same time, it enhances patient knowledge, reinforces patient empowerment, and supports behavioral adaptations. Furthermore, the considered use of AI can strengthen the physician-patient relationship. However, there is also a need for further research to develop solutions, demonstrate their effectiveness and benefits in healthcare, and ensure acceptance.

AbstractThe quality of the management of information systems comprises the quality of IT governance, the quality of strategic, tactical, and operational management, and the quality of architectures and infrastructures of health information systems.Quality of IT governance comprises, among other things, clear responsibilities for strategic, tactical, and operational management. Quality of strategic management comprises, among other things, the availability of a strategic information management plan aligned with business goals together with a strategic project portfolio and strategic monitoring based on key performance indicators. Quality of tactical management comprises state-of-the-art project management. Quality of operational management comprises, among other things, a business continuity plan, information technology service management and service-level agreements, and competent IT staff.The quality of architectures and infrastructures comprises, among other things, sufficient support for information and knowledge, reliable and user-friendly application systems, a flexible information system architecture, integrated application systems allowing high levels of data integration, semantic integration, context integration, user interface integration, feature integration, and process integration, and stable and available physical data processing systems.Evaluating the quality of information systems comprises several steps: identification of an evaluation question which depends on the phase of adoption of an application system and the decision that is to be made; deciding on a study design; the collection of quantitative or qualitative data; and, finally, answering the evaluation question to support a decision.

AbstractHealth care in different life situations is provided in various health care settings. Consequently, the information systems of different health care settings show specific characteristics both from a technological and a management perspective.Information systems in hospitals have to address the information needs of many clinical and administrative areas and groups of persons. Hospital information systems must therefore support a large number of functions and integrate a comparably large number of application components. Integrity and integration are thus especially crucial topics. Overall, systematic information management is essential in hospitals, being the most complex institutional health care setting.Information systems in nursing homes are typically less complex, as the number of areas and persons is smaller. Consequently, the number of application components is lower than in hospitals. Information systems in ambulatory nursing organizations and medical offices are even less complex and may comprise an even smaller number of application systems. Nevertheless, systematic management of the specific information systems is still needed at least to some extent in order to respond to specific requirements in these health care settings.Information systems in medical research facilities support dedicated functions such as research management or the planning and executing of studies. They typically comprise numerous application components and also have to respond to the requirement of cross-institutional or interprofessional research collaboration.Information systems in personal environments may typically support wellness, prevention, treatment, or rehabilitation and may be either part of institutional health information systems or be realized as a separate information system in a personal environment.

Especially in chronic diseases, such as shoulder impingement syndrome (SIS), good self-management is important for patients to take personal responsibility for their treatment and make informed decisions in rehabilitation processes. Mobile apps integrating game design elements have great potential to increase patients self-management skills. A total of 21 functionalities for a self-management app were derived from semi-structured interviews with six patients and three therapists. Thereby, welcome messages, a personalized home-screen, and training plans are rated as particular useful. Ten of these functionalities could be implemented in a first prototype of SISco: your shoulder impingement syndrome companion. SISco provides possibilities for creating and executing training programs, learning about SIS, checking daily challenges, and making diary entries. Thereby, SISco motivates patients via progress bars, collecting XP, unlocking content and Dr. SISco the virtual therapist. Future work includes the implementation of further functionalities and the evaluation of SISco for usability and user acceptance.