Digitalization and disruptive change in rheumatology.

INTRODUCTION: Recently, many sectors have seen disruptive changes due to the rapid progress in information and communication technology (ICT). The aim of this systematic literature review was to develop a first understanding of what is known about new ICTs in rheumatology and their disruptive potential. METHODS: PubMed, LIVIVO, and EBSCO Discovery Service (EDS) databases were searched for relevant literature. Use of new ICTs was identified, categorized, and disruptive potential was discussed. Articles from 2008 to 2021 in German and English were considered. RESULTS: A total of 3539 articles were identified. After application of inclusion/exclusion criteria, 55 articles were included in the analyses. The majority of articles (48) used a non-experimental design or detailed expert opinion. The new ICTs mentioned in these articles could be allocated to four main categories: technologies that prepare for the development of new knowledge by data collection (n = 32); technologies that develop new knowledge by evaluation of data (e.g., by inventing better treatment; n = 11); technologies that improve communication of existing knowledge (n = 32); and technologies that improve the care process (n = 29). Further assessment classified the ICTs into different functional subcategories. Based on these categories it is possible to estimate the disruptive potential of new ICTs. CONCLUSION: ICTs are becoming increasingly important in rheumatology and may impact patients' lives and professional conduct. The properties and disruptive potential of technologies identified in the articles differ widely. When looking into ICTs, doctors have focused on new diagnostic and therapeutic procedures but rarely on their disruptive potential. We recommend putting more effort into investigation of whether ICTs change the way rheumatology is performed and who is in control of it. Especially technologies that potentially replace physicians with machines, take control over the definition of quality in medicine, and/or create proprietary knowledge that is not accessible for doctors need more research.

Mobile App-based documentation of patient-reported outcomes - 3-months results from a proof-of-concept study on modern rheumatology patient management.

BACKGROUND: Mobile medical applications (Apps) offer innovative solutions for patients' self-monitoring and new patient management opportunities. Prior to routine clinical application feasibility and acceptance of disease surveillance using an App that includes electronic (e) patient-reported outcome measures (PROMs) warrant evaluation. Therefore, we performed a proof-of-concept study in which rheumatoid arthritis (RA) patients used an App (RheumaLive) to document their disease. METHODS: Accurate PROM reporting via an App in comparison to paper-based versions was investigated to exclude media bias. Sixty participants recruited from 268 consecutive RA outpatients completed paper-based and electronic PROMs (Hannover Functional Questionnaire/derived HAQ; modified RA disease activity index) using the App at baseline and follow-up visits. Between visits, patients used their App on their own smartphone according to their preferences. The equivalence of PROM data and user experiences from patients and physicians were evaluated. RESULTS: Patients' (78.3% female) mean (SD) age was 50.1 (13.1) years, disease duration 10.5 (9.1) years, and paper-based HAQ 0.78 (0.59). Mean confidence in Apps scored 3.5 (1.1, Likert scale 1 to 6). ePROMs' scores obtained by patients' data entry in the App were equivalent to paper-based ones and preferred by the patients. After 3 months, the App retention rate was 71.7%. Patients' overall satisfaction with the App was 2.2 (0.9, Likert scale 1 to 6). Patients and physicians valued the App, i.e., for patient-physician interaction: 87% reported that it was easier for them to document the course of the disease using the App than "only" answering questions about their current health during routine outpatient visits. Further App use was recommended in 77.3% of the patients, and according to physicians, in seven patients, the App use contributed to an increased adherence to therapy. CONCLUSION: Our study provides an essential basis for the broader implementation of medical Apps in routine care. We demonstrated the feasibility and acceptance of disease surveillance using a smartphone App in RA. App use was convincing as a reliable option to perform continuous, remote monitoring of disease activity and treatment efficacy. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02565225 . Registered on September 16, 2015 (retrospectively registered).

An ask-the-expert service on a rheumatology web site: who were the users and what did they look for?

OBJECTIVE: To analyze the inquiries sent to an online ask-the-rheumatologist service in order to identify the users' needs and requirements. METHODS: The official web site of the German Competence Network Rheumatology (www.rheumanet.org) provided expert information for patients, relatives, and physicians. We analyzed the content of 1,133 inquiries posted over 5 years and the experts' answers were blinded for analyses. RESULTS: Patients (60.0%), relatives (24.3%), and physicians (15.7%) addressed the experts. Inquiries were predominantly sent by women (62.2%). Distinct rheumatic diseases were mentioned in 40.5% of the inquiries, and 16.3% reported musculoskeletal symptoms without a definite diagnosis. The number of questions ranged from 1-7 per inquiry (mean±SD 1.58±0.9). Of the inquiries, 33.2% contained personal histories, 24.9% searched for a rheumatologist nearby, and 11.6% asked for a "second opinion." The questions covered a wide range of interests, including medication (30.8%), diagnosis-related issues (15.7%), laboratory tests (6.9%), (treatment) guidelines (6.2%), sexual and reproductive health issues (4.1%), and clinical trials (3.4%). In more than 50% of the inquiries, the information requested from the experts was already at least partly published on the web site. The experts' answers covered the users' questions completely in 91.8%, partly in 6.1%, and not at all in 2.1%. CONCLUSION: A standardized medical web site providing tailored and trustworthy information for all user groups gains from an ask-the-expert service. Only such an interactive online application is able to satisfy users' actual demands: searching for specific individualized information on the internet. Therefore, an ask-the-expert service contributes to optimized patient care.

Changing attitudes towards online electronic health records and online patient documentation in rheumatology outpatients.

OBJECTIVES: The Internet supports interactive patient assessments, online documentation and access to online electronic health records (EHRs), but little is known about the acceptance of these features and trends in rheumatology patients. Therefore, we studied patients' attitudes and willingness to participate in online patient (self-)documentation. METHODS: We interviewed 153 consecutive outpatients with rheumatoid arthritis, systemic lupus erythematosus or spondyloarthritis using a paperbased self-administered questionnaire. To detect recent trends in patients' perception we compared our 2006 data to the results of our survey conducted in 2001. P-values provided in the abstract reflect the comparisons from 2001 and 2006. RESULTS: Patients were predominantly female (69.3%; n.s.), mean age was 45.7+/-14.4 years (n.s.), and 68.6% (+18.6% compared to 2001; p<0.001) reported regular Internet use. Confidence in the Internet and reliability of online information were rated unchanged to 2001. Internet users appreciated to access their EHR online in 68.6% (+13.8% compared to 2001; p<0.01), (self-)monitor the course of their disease online in 80.0%, and answer outcome questionnaires online in 67.6%. Internet users considered computers as valuable instruments in the patient-doctor relationship (88.4%), 58.8% were not convinced that computer use influences the relationship positively. CONCLUSIONS: Attitudes of patients with rheumatic disorders (Internet users and non-users) towards online EHRs have improved since 2001, online applications for patient assessments and disease (self-)management in rheumatology seem feasible now. Nevertheless, unchanged low confidence rates in the Internet and in the reliability of medical information derived from the Internet should sound a note of caution regarding the implementation of such services.

[An example of internet-based quality assurance in rheumatology]. / Beitrag des Internet zur Qualitätssicherung in der Rheumatologie.

In Germany, patient care and medical progress have become increasingly influenced by quality assurance and quality management and also by a rapid increase in knowledge and information. Thus, modern information management achieves high relevance in medicine, too. The internet provides a fascinating medium with its open architecture and interaction possibilities offering new, trailblazing perspectives. This article shows examples of the current use of the internet for quality assurance at the RheumaNet, which functions as a presentation platform for the competence network for systemic inflammatory rheumatic diseases ('KN-Rheuma') in Germany. The RheumaNet has already contributed to achieving quality assurance by supplying extensive, valuable and reliable scientific information. Other innovative interactive and quality assuring applications have been developed, tested and implemented in the system. Future applications will deal with standardised online documentation modules, and aids for patient self-management are on their way.

[Rheumatology online: A survey among the members of the German Rheumatology Society]. / Internet in der RheumatologieEine Umfrage unter den Mitgliedern der Deutschen Gesellschaft für Rheumatologie.

OBJECTIVE: On behalf of the "Systemic Inflammatory Rheumatic Diseases Network" comprehensive, nationwide horizontal and vertical cross-linking of research and care is to be developed for the first time. The quality of scientific work and patient care is to be increased in the medium term through this improved communication and co-operation. Our objective was to determine what hardware and software are avail- able to the physicians involved, with a view to the Internet being used as a basis for communication and documentation within the network. METHODS: A survey was carried out among 723 active members of the German Rheumatology Society (DGRh). Data on the hardware and software used and on Internet access were collected using a unilateral questionnaire. RESULTS: The response rate among the addressed rheumatologists was 55.3%, with 64.1% of members in private practice replying. Of those responding 85% have Internet access, with rheumatologists in private practice using the Internet significantly less frequently at work than those working at a hospital (42% vs 80%). The latter accordingly reported a higher proportion of medical Internet usage (69% vs 52%, p<0.001). The survey demonstrated that software for private practices and hospitals shows a very variable picture with a multiplicity of systems being used. CONCLUSION: Use of the Internet for communication in the "Systemic Inflammatory Rheumatic Diseases Network" is practicable in hospitals but clearly restricted in the private practice sector. The widely varying software used in hospitals and private practices underlines the need for standardized, comprehensive documentation systems to be developed. To ensure acceptance and broadly based application, they need to be integrated into the existing computer infrastructure. In this context, Internetbased applications offer new opportunities through the use of system-independent file formats.

Differential diagnosis of high serum creatine kinase levels in systemic lupus erythematosus.

We report the clinical and bioptic findings for a 57-year-old woman with severe chloroquine-induced myopathy. Since 1989, she had been suffering from systemic lupus erythematosus (SLE) with renal involvement and undergone periods of treatment with azathioprine and cyclophosphamide. Additional therapy with chloroquine (CQ) was started because of arthralgia. At the same time, slightly increased creatine kinase (CK) levels were noted. Myositis was suspected, and the patient was treated with steroids. The CK increase persisted, however, and she developed progressive muscular weakness and muscular atrophy. Routine controls revealed markedly elevated CK levels of 1,700 U/l. The neurological and electrophysiological findings were not typical of myositis. Thus, muscle biopsy of the deltoid muscle was performed in order to exclude polymyositis or toxic myopathy. As it revealed chloroquine-induced myopathy, medication was stopped. Discriminating between primary SLE-induced affection of the musculoskeletal system and drug-induced side effects is important for appropriate treatment of SLE patients.