Consensus quality indicators for monitoring multiple sclerosis.

Multiple sclerosis (MS) as a chronic, degenerative autoimmune disease of the central nervous system has a longitudinal and heterogeneous course with increasing treatment options and risk profiles requiring constant monitoring of a growing number of parameters. Despite treatment guidelines, there is a lack of strategic and individualised monitoring pathways, including respective quality indicators (QIs). To address this, we systematically developed transparent, traceable, and measurable QIs for MS monitoring. Through literature review, expert discussions, and consensus-building, existing QIs were identified and refined. In a two-stage online Delphi process involving MS specialists (on average 53 years old and with 25 years of professional experience), the QIs were evaluated for content, clarity, and intelligibility, resulting in a set of 24 QIs and checklists to assess the quality of care. The final QIs provide a structured approach to document, monitor, and enhance the quality of care for people with MS across their treatment journey.

Toward mechanistic medical digital twins: some use cases in immunology.

A fundamental challenge for personalized medicine is to capture enough of the complexity of an individual patient to determine an optimal way to keep them healthy or restore their health. This will require personalized computational models of sufficient resolution and with enough mechanistic information to provide actionable information to the clinician. Such personalized models are increasingly referred to as medical digital twins. Digital twin technology for health applications is still in its infancy, and extensive research and development is required. This article focuses on several projects in different stages of development that can lead to specific-and practical-medical digital twins or digital twin modeling platforms. It emerged from a two-day forum on problems related to medical digital twins, particularly those involving an immune system component. Open access video recordings of the forum discussions are available.

Building digital patient pathways for the management and treatment of multiple sclerosis.

Recent advances in the field of artificial intelligence (AI) could yield new insights into the potential causes of multiple sclerosis (MS) and factors influencing its course as the use of AI opens new possibilities regarding the interpretation and use of big data from not only a cross-sectional, but also a longitudinal perspective. For each patient with MS, there is a vast amount of multimodal data being accumulated over time. But for the application of AI and related technologies, these data need to be available in a machine-readable format and need to be collected in a standardized and structured manner. Through the use of mobile electronic devices and the internet it has also become possible to provide healthcare services from remote and collect information on a patient's state of health outside of regular check-ups on site. Against this background, we argue that the concept of pathways in healthcare now could be applied to structure the collection of information across multiple devices and stakeholders in the virtual sphere, enabling us to exploit the full potential of AI technology by e.g., building digital twins. By going digital and using pathways, we can virtually link patients and their caregivers. Stakeholders then could rely on digital pathways for evidence-based guidance in the sequence of procedures and selection of therapy options based on advanced analytics supported by AI as well as for communication and education purposes. As far as we aware of, however, pathway modelling with respect to MS management and treatment has not been thoroughly investigated yet and still needs to be discussed. In this paper, we thus present our ideas for a modular-integrative framework for the development of digital patient pathways for MS treatment.

Forum on immune digital twins: a meeting report.

Medical digital twins are computational models of human biology relevant to a given medical condition, which are tailored to an individual patient, thereby predicting the course of disease and individualized treatments, an important goal of personalized medicine. The immune system, which has a central role in many diseases, is highly heterogeneous between individuals, and thus poses a major challenge for this technology. In February 2023, an international group of experts convened for two days to discuss these challenges related to immune digital twins. The group consisted of clinicians, immunologists, biologists, and mathematical modelers, representative of the interdisciplinary nature of medical digital twin development. A video recording of the entire event is available. This paper presents a synopsis of the discussions, brief descriptions of ongoing digital twin projects at different stages of progress. It also proposes a 5-year action plan for further developing this technology. The main recommendations are to identify and pursue a small number of promising use cases, to develop stimulation-specific assays of immune function in a clinical setting, and to develop a database of existing computational immune models, as well as advanced modeling technology and infrastructure.

Building a monitoring matrix for the management of multiple sclerosis.

Multiple sclerosis (MS) has a longitudinal and heterogeneous course, with an increasing number of therapy options and associated risk profiles, leading to a constant increase in the number of parameters to be monitored. Even though important clinical and subclinical data are being generated, treating neurologists may not always be able to use them adequately for MS management. In contrast to the monitoring of other diseases in different medical fields, no target-based approach for a standardized monitoring in MS has been established yet. Therefore, there is an urgent need for a standardized and structured monitoring as part of MS management that is adaptive, individualized, agile, and multimodal-integrative. We discuss the development of an MS monitoring matrix which can help facilitate data collection over time from different dimensions and perspectives to optimize the treatment of people with MS (pwMS). In doing so, we show how different measurement tools can combined to enhance MS treatment. We propose to apply the concept of patient pathways to disease and intervention monitoring, not losing track of their interrelation. We also discuss the use of artificial intelligence (AI) to improve the quality of processes, outcomes, and patient safety, as well as personalized and patient-centered care. Patient pathways allow us to track the patient's journey over time and can always change (e.g., when there is a switch in therapy). They therefore may assist us in the continuous improvement of monitoring in an iterative process. Improving the monitoring process means improving the care of pwMS.

[New master's program: multiple sclerosis management]. / Neuer Masterstudiengang: Multiple Sklerose Management.

The new study program "Multiple Sclerosis Management" is aimed at physicians, therapists, nurses, scientists, pharmacists, psychologists and biologists who want to specialize in the field of multiple sclerosis (MS). After successful accreditation in 2019, the first students have been in the master's program offered by Dresden International University (DIU) since 2020. Over a period of four semesters, it can be completed part-time and largely digitally. The master's program is divided into six modules focusing on basics, clinical and diagnostic aspects, MS studies and statistics, disease-modifying and symptomatic therapy, disease monitoring and documentation. The teaching includes theoretical parts and numerous practical units. A further goal is to derive therapeutic intervention plans and problem-solving strategies from scientific publications and clinical studies, to develop them further and to apply them in patient care. The lecturers come from Germany, Austria and Switzerland and are predominantly professors. The German Multiple Sclerosis Society is the patron of the course. This article presents the study program in detail.

Digital Biomarkers in Multiple Sclerosis.

For incurable diseases, such as multiple sclerosis (MS), the prevention of progression and the preservation of quality of life play a crucial role over the entire therapy period. In MS, patients tend to become ill at a younger age and are so variable in terms of their disease course that there is no standard therapy. Therefore, it is necessary to enable a therapy that is as personalized as possible and to respond promptly to any changes, whether with noticeable symptoms or symptomless. Here, measurable parameters of biological processes can be used, which provide good information with regard to prognostic and diagnostic aspects, disease activity and response to therapy, so-called biomarkers Increasing digitalization and the availability of easy-to-use devices and technology also enable healthcare professionals to use a new class of digital biomarkers-digital health technologies-to explain, influence and/or predict health-related outcomes. The technology and devices from which these digital biomarkers stem are quite broad, and range from wearables that collect patients' activity during digitalized functional tests (e.g., the Multiple Sclerosis Performance Test, dual-tasking performance and speech) to digitalized diagnostic procedures (e.g., optical coherence tomography) and software-supported magnetic resonance imaging evaluation. These technologies offer a timesaving way to collect valuable data on a regular basis over a long period of time, not only once or twice a year during patients' routine visit at the clinic. Therefore, they lead to real-life data acquisition, closer patient monitoring and thus a patient dataset useful for precision medicine. Despite the great benefit of such increasing digitalization, for now, the path to implementing digital biomarkers is widely unknown or inconsistent. Challenges around validation, infrastructure, evidence generation, consistent data collection and analysis still persist. In this narrative review, we explore existing and future opportunities to capture clinical digital biomarkers in the care of people with MS, which may lead to a digital twin of the patient. To do this, we searched published papers for existing opportunities to capture clinical digital biomarkers for different functional systems in the context of MS, and also gathered perspectives on digital biomarkers under development or already existing as a research approach.

Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers.

(1) Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living. (2) Methods: This study comprises results from two surveys: one collecting data from pwMS and their relatives (as informal caregivers) and another one providing information on the opinions and attitudes of healthcare professionals (HCPs). Data were analyzed descriptively and via generalized linear models. (3) Results: 185 pwMS, 25 informal caregivers, and 24 HCPs in the field of MS participated. Nine out of ten pwMS used information technology on a daily base. Individual impairments like in vision and cognition resulted in individual needs like the desire to actively monitor their disease course or communicate with their physician in person. HCPs reported that a complete medication overview, additional medication information, overview of future visits and a reminder of medication intake would be very helpful eHealth features for pwMS, while they themselves preferred features organizing and enriching future visits. (4) Conclusions: A closer look at the various profiles of eHealth adoption in pwMS and their caregivers indicated that there is a broad and robust enthusiasm across several subgroups that does not exclude anyone in general, but constitutes specific areas of interest. For pwMS, the focus was on eHealth services that connect previously collected information and make them easily accessible and understandable.

Innovation in Digital Education: Lessons Learned from the Multiple Sclerosis Management Master's Program.

Since 2020, the master's program "Multiple Sclerosis Management" has been running at Dresden International University, offering structured training to become a multiple sclerosis specialist. Due to the COVID-19 pandemic, many planned teaching formats had to be changed to online teaching. The subject of this paper was the investigation of a cloud-based digital hub and student evaluation of the program. Authors analyzed use cases of computer-supported collaborative learning and student evaluation of courses and modules using the Gioia method and descriptive statistics. The use of a cloud-based digital hub as a central data platform proved to be highly successful for learning and teaching, as well as for close interaction between lecturers and students. Students rated the courses very positively in terms of content, knowledge transfer and interaction. The implementation of the master's program was successful despite the challenges of the COVID-19 pandemic. The resulting extensive use of digital tools demonstrates the "new normal" of future learning, with even more emphasis on successful online formats that also increase interaction between lecturers and students in particular. At the same time, there will continue to be tailored face-to-face events to specifically increase learning success.

Digital Twins for Multiple Sclerosis.

An individualized innovative disease management is of great importance for people with multiple sclerosis (pwMS) to cope with the complexity of this chronic, multidimensional disease. However, an individual state of the art strategy, with precise adjustment to the patient's characteristics, is still far from being part of the everyday care of pwMS. The development of digital twins could decisively advance the necessary implementation of an individualized innovative management of MS. Through artificial intelligence-based analysis of several disease parameters - including clinical and para-clinical outcomes, multi-omics, biomarkers, patient-related data, information about the patient's life circumstances and plans, and medical procedures - a digital twin paired to the patient's characteristic can be created, enabling healthcare professionals to handle large amounts of patient data. This can contribute to a more personalized and effective care by integrating data from multiple sources in a standardized manner, implementing individualized clinical pathways, supporting physician-patient communication and facilitating a shared decision-making. With a clear display of pre-analyzed patient data on a dashboard, patient participation and individualized clinical decisions as well as the prediction of disease progression and treatment simulation could become possible. In this review, we focus on the advantages, challenges and practical aspects of digital twins in the management of MS. We discuss the use of digital twins for MS as a revolutionary tool to improve diagnosis, monitoring and therapy refining patients' well-being, saving economic costs, and enabling prevention of disease progression. Digital twins will help make precision medicine and patient-centered care a reality in everyday life.

Electronic Health Interventions in the Case of Multiple Sclerosis: From Theory to Practice.

(1) Background: eHealth interventions play a growing role in shaping the future healthcare system. The integration of eHealth interventions can enhance the efficiency and quality of patient management and optimize the course of treatment for chronically ill patients. In this integrative review, we discuss different types of interventions, standards and advantages of quality eHealth approaches especially for people with multiple sclerosis (pwMS). (2) Methods: The electronic databases PubMed, Cochrane and Web of Science were searched to identify potential articles for eHealth interventions in pwMS; based on 62 articles, we consider different ways of implementing health information technology with various designs. (3) Results: There already exist some eHealth interventions for single users with a single-use case, interventions with a social setting, as well as eHealth interventions that integrate various single and social interventions and even those that may be used additionally for complex use cases. A key determinant of consumer acceptance is a high-quality user-centric design for healthcare practitioners and pwMS. In pwMS, the different neurological disabilities should be considered, and particular attention must be paid to the course of the treatment and the safety processes of each treatment option. (4) Conclusion: Depending on the field of application and the respective users, interventions are designed for single, social, integrated or complex use. In order to be accepted by their target group, interventions must be beneficial and easy to use.

Data Collection in Multiple Sclerosis: The MSDS Approach.

Multiple sclerosis (MS) is a frequent chronic inflammatory disease of the central nervous system that affects patients over decades. As the monitoring and treatment of MS become more personalized and complex, the individual assessment and collection of different parameters ranging from clinical assessments via laboratory and imaging data to patient-reported data become increasingly important for innovative patient management in MS. These aspects predestine electronic data processing for use in MS documentation. Such technologies enable the rapid exchange of health information between patients, practitioners, and caregivers, regardless of time and location. In this perspective paper, we present our digital strategy from Dresden, where we are developing the Multiple Sclerosis Documentation System (MSDS) into an eHealth platform that can be used for multiple purposes. Various use cases are presented that implement this software platform and offer an important perspective for the innovative digital patient management in the future. A holistic patient management of the MS, electronically supported by clinical pathways, will have an important impact on other areas of patient care, such as neurorehabilitation.

A Digital Patient Portal for Patients With Multiple Sclerosis.

Background: Multiple Sclerosis is a chronic inflammatory disease of the central nervous system that requires a complex, differential, and lifelong treatment strategy, which involves high monitoring efforts and the accumulation of numerous medical data. A fast and broad availability of care, as well as patient-relevant data and a stronger integration of patients and participating care providers into the complex treatment process is desirable. The aim of the ERDF-funded project "Integrated Care Portal Multiple Sclerosis" (IBMS) was to develop a pathway-based care model and a corresponding patient portal for MS patients and health care professionals (HCPs) as a digital tool to deliver the care model. Methods: The patient portal was created according to a patient-centered design approach which involves both the patients' and the professionals' view. Buurmann's five iterative phases were integrated into a design science research process. A problem analysis focusing on functions and user interfaces was conducted through surveys and workshops with MS patients and HCPs. Based on this, the patient portal was refined and a prototype of the portal was implemented using an agile software development strategy. Results: HCPs and patients already use digital hardware and are open to new technologies. Nevertheless, they desire improved (digital) communication and coordination between care providers. Both groups require a number of functions for the patient portal, which were implemented in the prototype. Usability tests with patients and HCPs are planned to consider whether the portal is deemed as usable, acceptable as well as functional to prepare for any needed ameliorations. Discussion: After testing the patient portal for usability, acceptability, and functionality, it will most likely be a useful and high-quality electronic health (eHealth) tool for patient management from day care to telerehabilitation. It implements clinical pathways in a manner which is comprehensible for patients. Future developments of the patient portal modules could include additional diseases, the integration of quality management and privacy management tools, and the use of artificial intelligence to personalize treatment strategies.

Decision-making of older patients in context of the doctor-patient relationship: a typology ranging from "self-determined" to "doctor-trusting" patients.

Background. This qualitative study aims to gain insight into the perceptions and experiences of older patients with regard to sharing health care decisions with their general practitioners. Patients and Methods. Thirty-four general practice patients (≥70 years) were asked about their preferences and experiences concerning shared decision making with their doctors using qualitative semistructured interviews. All interviews were analysed according to principles of content analysis. The resulting categories were then arranged into a classification grid to develop a typology of preferences for participating in decision-making processes. Results. Older patients generally preferred to make decisions concerning everyday life rather than medical decisions, which they preferred to leave to their doctors. We characterised eight different patient types based on four interdependent positions (self-determination, adherence, information seeking, and trust). Experiences of a good doctor-patient relationship were associated with trust, reliance on the doctor for information and decision making, and adherence. Conclusion. Owing to the varied patient decision-making types, it is not easy for doctors to anticipate the desired level of patient involvement. However, the decision matter and the self-determination of patients provide good starting points in preparing the ground for shared decision making. A good relationship with the doctor facilitates satisfying decision-making experiences.

Complex health care decisions with older patients in general practice: patient-centeredness and prioritization in consultations following a geriatric assessment.

OBJECTIVE: To examine to what extent general practitioners in consultations after a geriatric assessment set shared health priorities with older patients experiencing multimorbidity and to what extent this was facilitated through patient-centered behavior. METHODS: Observation of consultations embedded in a cluster randomized controlled trial,(1) in which 317 patients from 41 general practices received the STEP assessment followed by a care planning consultation with their GPs. GPs in the intervention group used a structured procedure for setting health (care) priorities in contrast to control GPs. A sample of 43 consultations (24 intervention; 19 control) were recorded, transcribed and analyzed with regard to priority setting and patient-centeredness. RESULTS: Patient-centeredness was only moderately apparent in consultations dealing with complex care plans for older patients with multimorbidity. The shared determination of health priorities seemed unusual for both doctors and patients and was rarely practiced, albeit more frequently in intervention consultations. CONCLUSION: Setting health care priorities with patients experiencing multimorbidity is ethically desirable and medically appropriate. Yet a short structured guide for doctors cannot easily achieve this. PRACTICE IMPLICATIONS: More research is needed in regard to handling complex health needs of older patients. It requires a professional approach and training in patient-centered holistic care planning.

Impact of a priority-setting consultation on doctor-patient agreement after a geriatric assessment: cluster randomised controlled trial in German general practices.

BACKGROUND: General Practitioners (GPs) often have to simultaneously tackle multiple health problems of older patients. A patient-centred process that engages the patient in setting health priorities for treatment is needed. We investigated whether a structured priority-setting consultation reconciles the often-differing doctor-patient views on the importance of problems. DESIGN: Cluster randomised controlled trial with 40 GPs and their 317 consecutively recruited older patients. PROCEDURE: Following a geriatric assessment, patients and doctors independently rated the importance of each uncovered problem. GPs then selected priorities with their patients in a consultation. Trained intervention GPs held a structured consultation and utilised the list of uncovered patient problems with their importance ratings to agree priorities. Untrained control GPs only used the patient's problem list without importance ratings. MAIN OUTCOME: Doctor-patient agreement on independent importance ratings two weeks after the priority-setting consultation. ANALYSIS: Weighted kappa (κw) and multilevel logistic regression model. RESULTS: Intervention GPs and their patients determined mutual priorities for 20% of individual problems. In this process, GPs often succeeded in convincing their patients of the importance of vaccinations, lifestyle and cognitive issues. Likewise, patients convinced their GPs to prioritise their social and functional problems. Further treatment plans ensued in 84% of these priority areas. The regression model adjusting for clusters and baseline characteristics did not demonstrate significant differences in doctor-patient agreement on problems between groups a two weeks later. CONCLUSION: Differing views on the importance of health problems between GPs and older patients were not sustainably reconciled. The special consultation facilitated identification of priority problems for treatment despite differences in perceived importance of problems between patients and GPs. German clinical trials register drks 00000792.

Priority setting in general practice: health priorities of older patients differ from treatment priorities of their physicians.

AIM: To ascertain health priorities of older patients and treatment priorities of their general practitioners (GP) on the basis of a geriatric assessment and to determine the agreement between these priorities. METHODS: The study included a sample of 9 general practitioners in Hannover, Germany, and a stratified sample of 35 patients (2-5 patients per practice, 18 female, average age 77.7 years). Patients were given a geriatric assessment using the Standardized Assessment for Elderly Patients in Primary Care (STEP) to gain an overview of their health and everyday problems. On the basis of these results, patients and their physicians independently rated the importance of each problem disclosed by the assessment. Whereas patients assessed the importance for their everyday lives, physicians assessed the importance for patients' medical care and patients' everyday lives. RESULTS: Each patient had a mean ± standard deviation of 18 ± 9.2 health problems. Thirty five patients disclosed a total of 634 problems; 537 (85%) were rated by patients and physicians. Of these 537 problems, 332 (62%) were rated by patients and 334 (62%) by physicians as important for patients' everyday lives. In addition, 294 (55%) were rated by physicians as important for patients' medical care. Although these proportions of important problems were similar between patients and physicians, there was little overlap in the specific problems that each group considered important. The chance-corrected agreement (Cohen κ) between patients and physicians on the importance of problems for patients' lives was low (κ=0.23). Likewise, patients and physicians disagreed on the problems that physicians considered important for patients' medical care (κ=0.18, P<0.001 for each). CONCLUSION: The low agreement on health and treatment priorities between patients and physicians necessitates better communication between the two parties to strengthen mutual understanding.

Health and treatment priorities in patients with multimorbidity: report on a workshop from the European General Practice Network meeting 'Research on multimorbidity in general practice'.

Setting health and treatment priorities is necessary when caring for multiple and complex patient issues. This is already done in the doctor-patient consultation-yet implicitly rather than explicitly. The aim of this European General Practice Network workshop was to advance a consultation approach that deals with shared priority setting. The workshop was divided into three parts: (1) how to gain a comprehensive health overview for patients with multiple problems as a basis for priority setting; (2) how to establish priorities considering patient and doctor perspectives; and (3) how to practice a communication style that achieves shared priority setting. The workshop participants preferred to gain information on patients' health status using documentations from patient records rather than conducting systematic assessments. The group emphasized that medical as well as everyday life problems need to be considered when determining priorities, a procedure that requires time and resources not readily available in daily practice. Existing skills for person-centred communication with patients should be applied in order to agree on priorities. Overall it became apparent how challenging it is to arrange and prioritize an array of health problems in a consultation with patients. Existing concepts augmented by innovative systematic methods may be the way forward.