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.

[Digital health applications (DiGA) in the area of tension between progress and criticism : Discussion paper from the "Digital health" specialist group of the German Informatics Society]. / Digitale Gesundheitsanwendungen (DiGA) im Spannungsfeld von Fortschritt und Kritik : Diskussionsbeitrag der Fachgruppe "Digital Health" der Gesellschaft für Informatik e. V.

Since December 2019, digital health applications (DiGA) have been included in standard care in Germany and are therefore reimbursed by the statutory health insurance funds to support patients in the treatment of diseases or impairments. There are 48 registered DiGA listed in the directory of the Federal Institute of Drugs and Medical Devices (BfArM), mainly in the areas of mental health; hormones and metabolism; and muscles, bones, and joints. In this article, the "Digital Health" specialist group of the German Informatics Society describes the current developments around DiGA as well as the current sentiment on topics such as user-centricity, patient and practitioner acceptance, and innovation potential. In summary, over the past three years, DiGA have experienced a positive development, characterized by a gradually increasing availability of various DiGA and coverage areas as well as prescription numbers. Nevertheless, significant regulatory adjustments are still required in some areas to establish DiGA as a well-established instrument in long-term routine healthcare. Key challenges include user-centeredness and the sustainable use of the applications.

Psychotherapies and digital interventions for OCD in adults: What do we know, what do we need still to explore?

BACKGROUND: Despite significant advances in the understanding and treatment of obsessive compulsive disorder (OCD), current treatment options are limited in terms of efficacy for symptom remission. Thus, assessing the potential role of iterative or alternate psychotherapies is important. Also, the potential role of digital technologies to enhance the accessibility of these therapies, should not be underestimated. We also need to embrace the idea of a more personalized treatment choice, being cognisant of clinical, genetic and neuroimaging predictors of treatment response. PROCEDURES: Non-systematic review of current literature on emerging psychological and digital therapies for OCD, as well as of potential biomarkers of treatment response. FINDINGS: A number of 'third wave' therapies (e.g., Acceptance and Commitment Therapy, Mindfulness-Based Cognitive Therapy) have an emerging and encouraging evidence base in OCD. Other approaches entail employment of elements of other psychotherapies such as Dialectical Behaviour Therapy; or trauma-focussed therapies such as Eye Movement Desensitisation and Reprocessing, and Imagery Rescripting and Narrative Therapy. Further strategies include Danger Ideation Reduction Therapy and Habit Reversal. For these latter approaches, large-scale randomised controlled trials are largely lacking, and the precise role of these therapies in treating people with OCD, remains to be clarified. A concentrated 4-day program (the Bergen program) has shown promising short- and long-term results. Exercise, music, and art therapy have not been adequately tested in people with OCD, but may have an adjunctive role. Digital technologies are being actively investigated for enhancing reach and efficacy of psychological therapies for OCD. Biomarkers, including genetic and neuroimaging, are starting to point to a future with more 'personalised medicine informed' treatment strategizing for OCD. CONCLUSIONS: There are a number of potential psychological options for the treatment of people with OCD who do not respond adequately to exposure/response prevention or cognitive behaviour therapy. Adjunctive exercise, music, and art therapy might be useful, albeit the evidence base for these is very small. Consideration should be given to different ways of delivering such interventions, including group-based, concentrated, inpatient, or with outreach, where appropriate. Digital technologies are an emerging field with a number of potential applications for aiding the treatment of OCD. Biomarkers for treatment response determination have much potential capacity and deserve further empirical testing.

All together now - patient engagement, patient empowerment, and associated terms in personal healthcare.

BACKGROUND: Patients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are. METHODS: A systematic literature review was conducted to consolidate terms related to patients' having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map. RESULTS: Patient-centredness is a concept dominantly influenced by health care providers and can enhance patients' competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare. CONCLUSIONS: We plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area.

Tackling the scaling-up problem of digital health applications.

AIM: The purpose of this editorial is to provide guidance for the readers concerning the broad realm of approaches towards successful implementation of digital health applications into the health care system. Recent developments due to the challenges posed by the COVID-19 pandemic are used as a current angle. SUBJECT AND METHODS: All contributions within the special issue were scanned for their most decisive contribution to the special issue and the field of implementation science, with a focus on digital health. Micro, meso, and macro layers of implementation processes, as well as the technological perspective itself, are used as broad categories for sorting the contributions and structuring the special issue. RESULTS: The ten contributions to this special issue cover micro (n = 1), technology (n = 1), meso (n = 4) and macro (n = 2) perspectives on the implementation process of digital health applications. Two further contributions also tackle the issue from a wider perspective when aiming to structure telemedicine application types and barriers encountered when implementing digital health. CONCLUSION: Considering the wide array of research fields represented in this special issue, an emphasis is put on the importance of interdisciplinary work required for tackling the scale-up problem of digital health. As such, the special issue can assist in leveraging the full potential of digital health, not only when dealing with situations as out-of-the-ordinary as the current pandemic but also well beyond that, for example when dealing with the upcoming challenges of demographic change.

A transdiagnostic perspective of constructs underlying obsessive-compulsive and related disorders: An international Delphi consensus study.

BACKGROUND: The Research Domain Criteria seeks to bridge knowledge from neuroscience with clinical practice by promoting research into valid neurocognitive phenotypes and dimensions, irrespective of symptoms and diagnoses as currently conceptualized. While the Research Domain Criteria offers a vision of future research and practice, its 39 functional constructs need refinement to better target new phenotyping efforts. This study aimed to determine which Research Domain Criteria constructs are most relevant to understanding obsessive-compulsive and related disorders, based on a consensus between experts in the field of obsessive-compulsive and related disorders. METHODS: Based on a modified Delphi method, 46 experts were recruited from Australia, Africa, Asia, Europe and the Americas. Over three rounds, experts had the opportunity to review their opinion in light of feedback from the previous round, which included how their response compared to other experts and a summary of comments given. RESULTS: Thirty-four experts completed round one, of whom 28 (82%) completed round two and 24 (71%) completed round three. At the final round, four constructs were endorsed by ⩾75% of experts as 'primary constructs' and therefore central to understanding obsessive-compulsive and related disorders. Of these constructs, one came from the Positive Valence System (Habit), two from the Cognitive Control System (Response Selection/Inhibition and Performance Monitoring) and the final construct was an additional item suggested by experts (Compulsivity). CONCLUSION: This study identified four Research Domain Criteria constructs that, according to experts, cut across different obsessive-compulsive and related disorders. These constructs represent key areas for future investigation, and may have potential implications for clinical practice in terms of diagnostic processes and therapeutic management of obsessive-compulsive and related disorders.

Defining and Delimitating Telemedicine and Related Terms - An Ontology-Based Classification.

The way health care is delivered changes continuously and is increasingly supported by digital technologies, such as telemedicine. Many terms in that context exist, which are not defined consistently and therefore used ambiguously. This makes it difficult to assess the evidence base. Ontologies bring structure and clarity to the discourse around telemedicine and related terms. We use this tool to provide definitions of relevant terms and show their interrelations. The results provided will be applied to different case studies to show their applicability. We aim to provide a more evidence-based understanding of relevant terms in digital health.

Obsessive-Compulsive Disorder.

PURPOSE OF REVIEW: This article reviews current knowledge regarding diagnosis, pathophysiology, and treatment trends in obsessive-compulsive disorder (OCD), a severe, underrecognized, and chronic condition frequently encountered in neurologic practice. RECENT FINDINGS: With a lifetime prevalence estimated at 2.5%, OCD is a common condition that can also present comorbidly with neurologic disease. The core symptoms of OCD are obsessions and compulsions. Obsessions are intrusive repetitive thoughts, urges, images, or impulses that trigger anxiety and that the individual is not able to suppress. Compulsions are repetitive behaviors or mental acts occurring in response to an obsession with the intention of reducing the distress caused by obsessions. Neuroimaging, neuropsychological, and pharmacologic studies suggest that the expression of OCD symptoms is associated with dysfunction in a cortico-striato-thalamo-cortical circuit. Evidence-based treatments for OCD comprise pharmacotherapy and cognitive-behavioral therapy. Selective serotonin reuptake inhibitors (SSRIs) are the first-line drugs recommended for OCD, but significant differences exist in their use for OCD compared to their use for other mood and anxiety conditions, including the need for higher dosage, longer trials necessitated by a longer lag for therapeutic response, and typically lower response rates. Cognitive-behavioral therapy, based on the principles of exposure and response prevention, shows results superior to pharmacologic treatments with lower relapse rates on long-term follow-up and thus should be considered in the treatment plan of every patient with OCD. SUMMARY: OCD and obsessive-compulsive symptoms are frequently encountered in the neurologic clinic setting and require a high index of suspicion to effectively screen for them and an illness-specific therapeutic approach.

Identifying Obstacles and Research Gaps of Telemedicine Projects: Approach for a State-of-the-Art Analysis.

This paper presents an approach for an evaluation of finished telemedicine projects using qualitative methods. Telemedicine applications are said to improve the performance of health care systems. While there are countless telemedicine projects, the vast majority never makes the threshold from testing to implementation and diffusion. Projects were collected from German project databases in the area of telemedicine following systematically developed criteria. In a testing phase, ten projects were subject to a qualitative content analysis to identify limitations, need for further research, and lessons learned. Using Mayring's method of inductive category development, six categories of possible future research were derived. Thus, the proposed method is an important contribution to diffusion and translation research regarding telemedicine, as it is applicable to a systematic research of databases.

Quantifying dimensional severity of obsessive-compulsive disorder for neurobiological research.

Current research to explore genetic susceptibility factors in obsessive-compulsive disorder (OCD) has resulted in the tentative identification of a small number of genes. However, findings have not been readily replicated. It is now broadly accepted that a major limitation to this work is the heterogeneous nature of this disorder, and that an approach incorporating OCD symptom dimensions in a quantitative manner may be more successful in identifying both common as well as dimension-specific vulnerability genetic factors. As most existing genetic datasets did not collect specific dimensional severity ratings, a specific method to reliably extract dimensional ratings from the most widely used severity rating scale, the Yale-Brown Obsessive Compulsive Scale (YBOCS), for OCD is needed. This project aims to develop and validate a novel algorithm to extrapolate specific dimensional symptom severity ratings in OCD from the existing YBOCS for use in genetics and other neurobiological research. To accomplish this goal, we used a large data set comprising adult subjects from three independent sites: the Brazilian OCD Consortium, the Sunnybrook Health Sciences Centre in Toronto, Canada and the Hospital of Bellvitge, in Barcelona, Spain. A multinomial logistic regression was proposed to model and predict the quantitative phenotype [i.e., the severity of each of the five homogeneous symptom dimensions of the Dimensional YBOCS (DYBOCS)] in subjects who have only YBOCS (categorical) data. YBOCS and DYBOCS data obtained from 1183 subjects were used to build the model, which was tested with the leave-one-out cross-validation method. The model's goodness of fit, accepting a deviation of up to three points in the predicted DYBOCS score, varied from 78% (symmetry/order) to 84% (cleaning/contamination and hoarding dimensions). These results suggest that this algorithm may be a valuable tool for extracting dimensional phenotypic data for neurobiological studies in OCD.

Conceptual Considerations on the Integration of Quality Indicators into Clinical Pathways.

Health care systems need to cope with continuous changes such as with the current trends towards pay-for-performance and value-based health care. In this context, the article aims at analysing the potentials of the integration and utilisation of quality indicators in clinical pathways. It comprises the first steps of a design-oriented research process, i.e. problem motivation and objective definition. Therefore, a conceptual framework for pathway-integrated quality indicators is proposed. Potentials of the approach are outlined in three use case scenarios. The analysis points out great potentials for quality management on institutional and network level and for bridging the gap between medical research and practice. Further research topics are derived and summarised in an agenda.

Towards lifetime electronic health record implementation.

Integrated care concepts can help to diminish demographic challenges. Hereof, the use of eHealth, esp. overarching electronic health records, is recognized as an efficient approach. The article aims at rigorously defining the concept of lifetime electronic health records (LEHRs) and the identification of core factors that need to be fulfilled in order to implement such. A literature review was conducted. Existing definitions were identified and relevant factors were categorized. The derived assessment categories are demonstrated by a case study on Germany. Seven dimensions to differentiate types of electronic health records were found. The analysis revealed, that culture, regulation, informational self-determination, incentives, compliance, ICT infrastructure and standards are important preconditions to successfully implement LEHRs. The article paves the way for LEHR implementation and therewith for integrated care. Besides the expected benefits of LEHRs, there are a number of ethical, legal and social concerns, which need to be balanced.

Canadian clinical practice guidelines for the management of anxiety, posttraumatic stress and obsessive-compulsive disorders.

BACKGROUND: Anxiety and related disorders are among the most common mental disorders, with lifetime prevalence reportedly as high as 31%. Unfortunately, anxiety disorders are under-diagnosed and under-treated. METHODS: These guidelines were developed by Canadian experts in anxiety and related disorders through a consensus process. Data on the epidemiology, diagnosis, and treatment (psychological and pharmacological) were obtained through MEDLINE, PsycINFO, and manual searches (1980-2012). Treatment strategies were rated on strength of evidence, and a clinical recommendation for each intervention was made, based on global impression of efficacy, effectiveness, and side effects, using a modified version of the periodic health examination guidelines. RESULTS: These guidelines are presented in 10 sections, including an introduction, principles of diagnosis and management, six sections (Sections 3 through 8) on the specific anxiety-related disorders (panic disorder, agoraphobia, specific phobia, social anxiety disorder, generalized anxiety disorder, obsessive-compulsive disorder, and posttraumatic stress disorder), and two additional sections on special populations (children/adolescents, pregnant/lactating women, and the elderly) and clinical issues in patients with comorbid conditions. CONCLUSIONS: Anxiety and related disorders are very common in clinical practice, and frequently comorbid with other psychiatric and medical conditions. Optimal management requires a good understanding of the efficacy and side effect profiles of pharmacological and psychological treatments.