Patient-reported outcomes in large vessel vasculitis: insights from a retrospective analysis of disease activity and associated factors.

BACKGROUND: Patient-reported outcomes (PROs) play a crucial role in assessing rheumatic diseases, offering insights into disease evaluation and treatment efficacy. This study focuses on PRO assessment in large vessel vasculitides, including Takayasu Arteritis and Giant Cell Arteritis (GCA). METHODS: We retrospectively analyzed routine data from patients treated at our rheumatology clinic over a 10-year span. Patient and physician-rated global disease activity scale (G-DAS) scores, measured on a numeric rating scale (0-10 points), were collected at each visit. Clinical variables like age, sex, body mass index (BMI), disease duration, lab values, pain perception, and questionnaire responses were recorded. Linear regression and generalized additive linear regression (GAM analysis) examined associations between PROs and these factors. RESULTS: The study included 138 patients, primarily diagnosed with GCA (94.4%). Mean follow-up was 2.5 years (0-7.7). Patient and physician G-DAS exhibited a moderate correlation (Pearson R 0.19, CI 0.14-0.24, p < 0.001). Higher patient G-DAS correlated with younger age (CI -3.4 - -1.5, p < 0.001), increased pain (CI 3.5-4, p < 0.001), functional limitations (HAQ, CI 0.5-0.6, p < 0.001), reduced physical (CI 2.3-2.7, p ≤ 0.001) and psychological well-being (CI 2.1-2.5, p < 0.001), and higher BMI (CI 1.3-2.4, p < 0.001). Physician G-DAS correlated with Birmingham Vasculitis Activity Score (V3.0; R 0.42, p 0.046) and were significantly linked to serum CRP elevations (ß = 0.04, CI 0.0-0.08, p 0.028). CONCLUSIONS: These findings underscore the need to integrate PRO measures into vasculitis disease management strategies, enhancing the understanding of disease activity from the patient's perspective.

[Identification of rheumatological health apps in the Apple app store applying the "semiautomatic retrospective app store analysis" method : A longitudinal observation]. / Identifikation rheumatologischer Gesundheits-Apps im Apple App Store mit der Methode der "semiautomatischen retrospektiven App Store-Analyse" : Eine longitudinale Betrachtung.

BACKGROUND: The Apple and Google app stores offer a wide range of health apps. It is still a challenge to find valuable and qualified apps. OBJECTIVE: Can German language apps be identified using the "semiautomated retrospective app store analysis" (SARASA) method for the field of rheumatology? MATERIAL AND METHOD: The SARASA is a semiautomated method to select and characterize apps listed in the app store. After the first application in February 2018 SARASA was applied again to the Apple app store in February 2020. RESULTS: In February 2018 it was possible to acquire metadata for 103,046 apps and in February 2020 data for 94,735 apps that were listed in the category "health and fitness" or "medicine" in Apple's app store frontend for Germany. After applying the search terms 59 apps with a German language app description were identified for the field of rheumatology in 2018 and 53 apps in 2020. For these, more detailed manual reviews seem worthwhile. In 2018, the apps found were more likely to address patients than physicians and this was more balanced in 2020. In addition, it became apparent that for certain diseases there was no app developer activity. The percentage breakdown of matches by search term revealed substantial fluctuations in the app market when comparing 2018 to 2020. DISCUSSION: The SARASA method provides a useful tool to identify apps from app stores that meet predefined, formal criteria. Subsequent manual checks of the quality of the contents are still necessary. Further development of the SARASA method and consensus and standardization of quality criteria are worthwhile. Quality criteria should be considered for offers of mobile health apps in app stores.

[Statement of the German Society for Rheumatology (DGRh) on the use of video consultations in rheumatology]. / Stellungnahme der Deutschen Gesellschaft für Rheumatologie e. V. (DGRh) zur Anwendung der Videosprechstunde in der Rheumatologie.

For several years video consultations have been regarded as a new form of medical healthcare infrastructure, in addition to personal doctor-patient contacts and have also been partly promoted. The COVID-19 pandemic brought unexpected topicality and attention to the use of video consultations. The National Association of Statutory Health Insurance Physicians (Kassenärztliche Bundesvereinigung) decided on special regulations in the context of the COVID-19 pandemic, which reduce previous obstacles to the use of telemedicine and video consultations (and also partly of conventional telephony). The present statement of the German Society of Rheumatology (DGRh) on the use of video consultations is intended to give an overview of in which form and with which limitations video consultations can be used in rheumatology in Germany. It sketches an outlook on how video consultations can undertake which functions in rheumatological care in the future.

[Position paper of the commission on digital rheumatology of the German Society of Rheumatology: tasks, targets and perspectives for a modern rheumatology]. / Positionspapier der Kommission Digitale Rheumatologie der Deutschen Gesellschaft für Rheumatologie e. V.: Aufgaben, Ziele und Perspektiven für eine moderne Rheumatologie.

Digitalization in the healthcare system is a great challenge for rheumatology as for other medical disciplines. The German Society for Rheumatology (DGRh) wants to actively participate in this process and benefit from it. By founding the commission on digital rheumatology, the DGRh has created a committee that deals with the associated tasks, advises the DGRh on questions and positions associated with digital health. For the DGRh, this affects the most diverse areas of digitalization in medicine and rheumatology. This position paper presents the topics and developments currently handled by the commission and the tasks identified.

Quality of care predicts outcome in systemic lupus erythematosus: a cross-sectional analysis of a German long-term study (LuLa cohort).

OBJECTIVE: Our aim was to study the quality of medical care in patients with systemic lupus erythematosus (SLE) to understand gaps and to analyze the association with outcome of the disease. METHODS: Information on demographics and medical care was assessed by self-reported questionnaires among SLE patients (LuLa cohort, 2011, n = 580). In total, 21 aspects of medical care were analyzed. Univariate analysis selected 10 predictor variables for further analysis: (1) urine examination and (2) blood test in the previous year, (3) taking antimalarials, (4) taking vitamin D and calcium if the dosage of prednisolone was greater than 7.5 mg/day, counseling regarding (5) lipid metabolism, (6) vaccination, and (7) blood pressure, and treatment of the comorbidities (8) hypertension, (9) osteoporosis and (10) lipid metabolism disorder. The association of these 10 items with the outcome of the disease, assessed in 2015, was analyzed by linear regression analysis, adjusted for age, disease duration and sex. RESULTS: On average six of the 10 items were met (±1.7). Receiving more clinical care in 2013 was predictive for low disease activity (SLAQ, p = 0.024, ß = -0.104, corr. R2 = 0.048), low progress in disease-related damage (Delta Brief Index of Lupus Questionnaire, p = 0.048, ß = -0.132, corr. R2 = 0.036) and high health-related quality of life (SF-12 physical, p = 0.035, ß = 0.100, corr. R2 = 0.091) in 2015. CONCLUSION: Our study illustrates a link between the quality of care and the SLE outcome parameters disease activity, disease-related damage and quality of life. Consistent considerations of these care parameters, which are recommended in several management guidelines, could therefore be a good approach to improve the outcome of patients with SLE.

Medical adherence in patients with systemic lupus erythematosus in Germany: predictors and reasons for non-adherence - a cross-sectional analysis of the LuLa-cohort.

Objective Adherence to medication has a major impact on treatment control and success especially in chronic diseases but often remains unrecognized. Besides clinical, socioeconomic, disease-related and treatment-related parameters, general and personal health beliefs, as well as perception of health, can affect adherence. Our aim was to investigate the adherence to lupus-specific medications in German lupus patients and to assess influencing factors including detrimental or beneficial effects of health perceptions and beliefs. Methods The Lupus Erythematosus (LE) Long-Term Study (LuLa-study) is a nationwide longitudinal study among German Caucasian patients with systemic lupus erythematosus who have been assessed annually using a self-reported questionnaire since 2001. In 2013, we included questions concerning medical adherence (Morisky Medication Adherence Scale; MMAS-4), beliefs about medication prescribed (BMQ), illness perception and about the patients' health locus of control (HLC). We present a cross-sectional analysis to assess predictors of adherence using a multivariable stepwise logistic regression. Results Five hundred and seventy-nine patients participated, 81 of whom did not take any lupus-specific medication and 40 of whom did not complete the MMAS-4 and were therefore omitted. Only 62.7% reported high adherence. Unintentional behaviour for low medical adherence exceeded the intentional behaviour by far. The use of azathioprine (OR: 1.85; 95% CI: 1.02-3.34), prednisone <7.5 mg (OR: 1.56; 95% CI: 0.97-2.49), a higher age (OR: 1.06; 95% CI: 1.03-1.08) and higher external HLC (OR: 1.15; 95% CI: 1.01-1.30) proved conducive for high adherence in our multivariable model. On the contrary, the general perception of medication being harmful or addictive (OR: 0.89; 95% CI: 0.82-0.97) was detrimental. Conclusion A low belief that one's own health is determined by healthcare providers (external HLC) and the belief of the harmfulness of medication were independent predictors of low adherence besides age and the choice of the medical agent. The recognition of these potential obstacles in physician-patient relationships is essential to ameliorate adherence. Provision of sufficient information and education might help to reach the best possible outcome.

[Self-monitoring in inflammatory rheumatic diseases]. / Selbst-Monitoring bei entzündlich-rheumatischen Erkrankungen.

BACKGROUND: Active involvement of patients in their care has led to better treatment and outcomes. Tight control concepts emphasize the need for regular assessments including patients' active involvement by self-monitoring. METHODS: The literature was screened with respect to published experiences of self-monitoring of rheumatoid arthritis and spondyloarthritides. The use of "patient-reported outcome" (PRO) instruments can facilitate self-monitoring. Potentially applicable PROs and their correlations to clinical parameters as well as modern data acquisition modes are presented. RESULTS: Some experiences for self-monitoring have been reported. Recommendations from national and international professional rheumatology societies do not yet consider self-monitoring; however, PROs might be used for self-monitoring but instructions for patients on "how to deal with self-monitored PRO values" are missing. CONCLUSION: Self-monitoring of inflammatory rheumatic diseases seems feasible. Further evaluation studies are warranted to guarantee an optimized direct patient involvement in their management beyond outpatient care in hospitals and private practices so that they can thus contribute to a better outcome.

[Gender-specific differences in capillaroscopy in healthy persons and patients with inflammatory rheumatic diseases]. / Geschlechtsspezifische Unterschiede bei Gesunden und Patienten mit entzündlich-rheumatischen Erkrankungen in der Kapillarmikroskopie.

BACKGROUND: Capillaroscopy is an established tool to assess morphological and functional findings of the microcirculation which have a confirmed association with disease activity and damage of inflammatory rheumatic diseases, especially systemic sclerosis. Hairpin-shaped capillaries with normal density predict a very low risk for collagenosis. METHODS: Own databases were evaluated with respect to the topic of the manuscript and the current literature was evaluated. RESULTS: The healthy population does not only demonstrate hairpin shape as capillaroscopic normal findings and morphological and functional abnormalities can also be found which show various patterns depending on gender and age. These can be found in healthy persons and also patients with collagenosis. Ectasia and sludge phenomenon are more common in women and tortuous capillaries are more common in men. Capillary filling is often decreased in women and increased in male patients. CONCLUSION: When assessing capillaroscopy findings, gender and the morphological or functional alterations which can be found in the normal healthy population should be taken into consideration. In further studies with capillaroscopy as the target parameter, the potential source of the disturbance should be known, especially in small populations, and if necessary balanced by weighted randomization.

Age-specific prevalence of diagnosed systemic lupus erythematosus in Germany 2002 and projection to 2030.

OBJECTIVE: The objective of this report is to estimate the prevalence and future number of cases of systemic lupus erythematosus (SLE) in Germany. METHODS: Data from a representative sample of all insurants from the statutory health insurance in Germany comprising more than 2.3 million individuals have been screened for SLE diagnoses. The gender- and age-specific prevalence of SLE is calculated. The case definition is based on at least one recorded diagnosis of SLE during 2002. The stratum-specific prevalence is applied to the current and the future population of Germany in order to estimate and predict the number of people with SLE until 2030. RESULTS: The overall prevalence of diagnosed SLE in 2002 was 15.4 (95% CI: 13.1-17.9) and 55.4 (51.4, 59.8) per 100,000 in the male and female German population. This corresponds to an estimated 30,000 and 31,000 people with diagnosed SLE in 2002 and 2010, respectively. This number will slightly increase until 2020 and decrease thereafter. CONCLUSIONS: Compared with health insurance data from France, the prevalence in our data is similar. Under the assumption that the gender- and age-specific prevalence of SLE in Germany will not change considerably, the number of cases in the next two decades will change only slightly.

[What factors determine the direct medical costs of patients with systemic lupus erythematosus in Germany? Subanalysis of the LUCIE study]. / Welche Faktoren bestimmen die direkten Krankheits-kosten bei Patienten mit Systemischem Lupus Erythe-matodes in Deutschland? - Subanalyse der LUCIE-Studie.

OBJECTIVES: The aim of this study was to evaluate annual direct medical costs of adult SLE patients with active autoantibody positive disease on medication in Germany. METHODS: A multicentre, observational, retrospective European study with German sub-analysis was performed. Costs were assessed according to national tariffs. RESULTS: 10 German centres included 77 patients. The mean (SD) annual direct medical costs of patients were € 3 452.21 (3 777.07), and were 3.4 times higher in severe than non-severe patients (€ 5 291.07 vs. 1 564.97; p<0.001). Cost of medication (€ 2 349.40) represented 68.1% of the total cost. Flares, especially severe flares, were identified as cost predictors. Each flare increased the annual total cost by € 2 164,01 (p<0,001). CONCLUSION: The annual direct medical cost of SLE patients in Germany is linked to disease severity. Medical treatments and severe flares were identified as the cost predictors and drivers, respectively.

Diagnostic algorithm for Raynaud's phenomenon and vascular skin lesions in systemic lupus erythematosus.

Skin discolorations and skin lesions due to vascular pathologies are common clinical features in systemic lupus erythematosus. A variety of clinical manifestations such as Raynaud's phenomenon, acrocyanosis, livedo patterns, erythematous or violaceous macules and papules or necrosis are triggered by heterogeneous pathophysiological mechanisms such as vasospasm, vasculitis or thromboembolism. A standardized macro- and microvascular assessment is necessary to establish the correct diagnosis. We describe and illustrate common clinical features of vascular skin manifestations in systemic lupus erythematosus and present a diagnostic algorithm.

Computer and internet use in vascular outpatients--ready for interactive applications?

BACKGROUND: Exploring patients' computer and internet use, their expectations and attitudes is mandatory for successful introduction of interactive online health-care applications in Angiology. PATIENTS AND METHODS: We included 165 outpatients suffering from peripheral arterial disease (PAD; n = 62) and chronic venous and / or lymphatic disease (CVLD; n = 103) in a cross-sectional-study. Patients answered a paper-based questionnaire. RESULTS: Patients were predominantly female (54.5%). 142 (86.1%) reported regular computer use for 9.7 +/- 5.8 years and 134 (81.2 %) used the internet for 6.2 +/- 3.6 years. CVLD-patients and internet-user were younger and higher educated, resulting in a significant difference in computer and internet use between the disease groups (p < 0.01 for both). Time spent online summed up to 4.3 +/- 2.2 days per week and 1.44 +/- 1.2 hours per day for all internet users without significant differences between the groups. The topics retrieved from the internet covered a wide spectrum and searches for health information were mentioned by 41.2 %. Although confidence in the internet (3.3 +/- 1.1 on a 1-6 Likert scale) and reliability in information retrieved from the internet (3.1 +/- 1.1) were relatively low, health-related issues were of high actual and future interest. 42.8% of the patients were even interested in interactive applications like health educational programs, 37.4% in self-reported assessments and outcome questionnaires and 26.9% in chatforums; 50% demanded access to their medical data on an Internetserver. Compared to older participants those < 50 yrs. used the internet more often for shopping, chatting, and e-mailing, but not for health information retrieval and interactive applications. CONCLUSIONS: Computers are commonly used and the internet has been adopted as an important source of information by patients suffering from PAD and CVLD. Besides, the internet offers great potentials and new opportunities for interactive disease (self-)management in angiology. To increase confidence and reliability in the medium a careful introduction and evaluation of these new online applications is mandatory.

Internet use in rheumatology outpatients in 2006: gender less important.

OBJECTIVE: Exploring patients' Internet use, their online needs and requirements, expectations and attitudes towards the Internet is mandatory to effectively provide interactive online applications and information. METHODS: Within a prospective study, 153 consecutive outpatients with rheumatoid arthritis, systemic lupus erythematosus or spondyloarthritis answered a paper-based questionnaire investigating their Internet use, interests, pattern and degree of utilization. Sociodemographic and functional disability data were collected. The data were compared with our survey of 2001 and to the normal German population. RESULTS: Patients were predominantly female (69.3%; n.s.). Mean age was 45.7+/-14.4 years (n.s.). 68.6% (+18.6%, p=0.0027) reported regular Internet use for 5.0+/-2.6 yrs. Internet use in 2006 is still age- and education-dependent (p<0.001, p=0.003). Differences by gender observed in 2001 no longer existed as women increased their Internet use from 2.9 to 6.1 hours/week (p=0.001, p=0.0006). Searching for health-related information remained an important topic. Interest in e-communication and interactive applications strongly increased. Independently of gender and functional disability, patients' future online interests focussed on information on diseases, medications, health care providers and patient education. Confidence in the Internet and reliability of information were rated unchanged since 2001. CONCLUSION: Gender no longer has significant impact on Internet use. The great potentials of Internet services-well accepted by patients and contributing substantially to more effective and improved disease (self-) management strategies-should encourage rheumatologists to provide interactive applications and high-quality information on Internet platforms and in routine patient care. Continuous research to explore the effects of Internet-delivered information on patients' attitudes,expectations, behaviour and outcome is required.

Hypogonadism in Wegener's granulomatosis.

OBJECTIVE: Current developments in the management of Wegener's granulomatosis (WG) focus on adoption of therapeutic strategies to avoid complications of both the disease and its therapy. Systematic analyses with respect to the reproductive system in WG are missing. METHODS: Data of a cross-sectional study of sexual hormones in 19 male WG patients were analysed. Disease extension was classified according to the ears, nose, and throat (E), lungs (L), and kidneys (K) classification (ELK classification) and to the disease extent index (DEI). Laboratory investigation included measurement of gonadotrophins, oestradiol, and total serum testosterone. Hypogonadism was defined by an increase in follicle-stimulating hormone (FSH) beyond twice the upper reference range in the presence of low serum testosterone. Thirty-eight age-matched men served as controls. RESULTS: Hypogonadism was found in 52.6% of the patients but was not detectable in any of the controls (p<0.0001). No significant correlation to any clinical factor of systemic vasculitis, current or past medication was detected. In particular, testosterone or FSH levels were not correlated with current or cumulative use of cyclophosphamide or corticosteroids (p = 0.417, p = 0.293; p = 0.893, p = 0.317). CONCLUSION: Data of our study revealed an unexpected high rate of hypogonadism irrespective of cyclophosphamide use, and subclinical involvement of the testes by the vasculitis itself might be an alternative explanation. Screening during the course of the disease is reasonable as hypogonadism might severely affect patients' quality of life. Further prospective studies with respect to gender-specific changes in the reproductive system are warranted.

Self-assessments of patients via Tablet PC in routine patient care: comparison with standardised paper questionnaires.

OBJECTIVE: We evaluated the feasibility of electronic data capture of self-administered patient questionnaires using a Tablet PC for integration in routine patient management; we also compared these data with results received from corresponding paper-pencil versions. METHODS: Standardised patient questionnaires (FFbH/HAQ, BASDAI, SF-36) were implemented in our documentation software. 153 outpatients (rheumatoid arthritis, systemic lupus erythematosus, spondyloarthritis) completed sets of questionnaires as paper-pencil and electronic versions using a Tablet PC. The quality and validity of data obtained using a Tablet PC and the capability of disabled patients to handle it were assigned; patients' experiences, preferences and computer/internet use were also assessed. RESULTS: Scores obtained by direct data entry on the Tablet PC did not differ from the scores obtained by the paper-pencil questionnaires in the complete group and disease subgroups. No major difficulties using the Tablet PC occurred. 62.1% preferred remote data entry in the future. Seven (4.6%) patients felt uncomfortable with the Tablet PC due to their rheumatic disease. CONCLUSIONS: Self-administered questionnaires via Tablet PC are a facile and capable option in patients with rheumatic diseases to monitor disease activity, efficacy and safety assessments continuously. Tablet PC applications offers directly available data for clinical decision-making improves quality of care by effective patient monitoring, and contributes to patients' empowerment.

[Disease-oriented Internet use in outpatients with inflammatory rheumatic diseases]. / Krankheitsbezogene Internetnutzung bei Patienten mit entzündlich-rheumatischen Systemerkrankungen.

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 available to the patients involved, with a view to the Internet being used as a basis for communication. The ultimate aim was to provide patients with an adequate source of information on care. METHODS: A survey was carried out among 400 patients attending our outpatient clinics. Data on the hardware and software used and on Internet access and patterns and degree of utilization were collected using a unilateral questionnaire. RESULTS: 326 patients filled in the questionnaire. 163 of those responding had Internet access, with younger and better educated patients using the Internet significantly more frequently. No dependency was noted on gender or marital status. Mean time duration for Internet use was longer in men. 55.8% of the internet users searched for medical questions. Major search topics included up to date therapeutic options (46.6%) and information on specific diseases (28.8%). CONCLUSION: Internet is an important information medium for patients. Technical requirements and high motivation make communication practicable for about 50% of patients. To ensure acceptance, the Internet platform of the systemic inflammatory rheumatic diseases network needs to be aligned to patients' requirements, bearing in mind the need for extensive high-value, reliable scientific information to be offered on the website.