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1.
Z Rheumatol ; 2021 Aug 27.
Article in German | MEDLINE | ID: covidwho-2285746

ABSTRACT

INTRODUCTION: In order to successfully integrate telemedicine into the daily routine of rheumatology, both the patient's and the physician's perspective are important. For this purpose, a detailed study by means of a web-based survey was conducted by the Working Group Young Rheumatology (AGJR) of the German Society for Rheumatology (DGRh) and the German Rheumatism League National Association. By means of subgroup analysis of the data regarding video consultation, the aim was now to find out which requirements and wishes patients and physicians have for video consultations. METHODS: The prospective survey was distributed via social media, QR code and email. Descriptive statistics and regression analysis related to video consultation were performed and correlations were shown. RESULTS: The data indicated positive attitudes toward video consultation on the part of both patients (n = 299) and rheumatologists (n = 129). A correlation between age and positive opinion of the video consultation was found among the patients (r = 0.161, p = 0.006), especially among female patients a positive approval of the video consultation was found with increasing age (r = 0.244, p < 0.001 to male patients: r = -0.190, p = 0.145). Regarding the travelling time to the treating rheumatologist, male patients found the video consultation more attractive with increasing travelling time (r = 0.229, p = 0.078). With respect to the wishes of patients and physicians, video consultation should be used primarily for follow-up or emergency appointments. Video consultation for initial appointments, on the other hand, was very rarely mentioned. CONCLUSION: During the COVID 19 pandemic, video consultation was increasingly popular among rheumatology patients as well as among rheumatologists.

2.
Rheumatol Int ; 42(12): 2267-2276, 2022 12.
Article in English | MEDLINE | ID: covidwho-2059804

ABSTRACT

Dermatomyositis is a rare, type I interferon-driven autoimmune disease, which can affect muscle, skin and internal organs (especially the pulmonary system). In 2021, we have noted an increase in new-onset dermatomyositis compared to the years before the SARS-CoV-2 pandemic in our center. We present four cases of new-onset NXP2 and/or MDA5 positive dermatomyositis shortly after SARS-CoV-2 infection or vaccination. Three cases occurred within days after vaccination with Comirnaty and one case after SARS-CoV-2 infection. All patients required intensive immunosuppressive treatment. MDA5 antibodies could be detected in three patients and NXP2 antibodies were found in two patients (one patient was positive for both antibodies). In this case-based systematic review, we further analyze and discuss the literature on SARS-CoV-2 and associated dermatomyositis. In the literature, sixteen reports (with a total of seventeen patients) of new-onset dermatomyositis in association with a SARS-CoV-2 infection or vaccination were identified. Ten cases occurred after infection and seven after vaccination. All vaccination-associated cases were seen in mRNA vaccines. The reported antibodies included for instance MDA5, NXP2, Mi-2 and TIF1γ. The reviewed literature and our cases suggest that SARS-CoV-2 infection and vaccination may be considered as a potential trigger of interferon-pathway. Consequently, this might serve as a stimulus for the production of dermatomyositis-specific autoantibodies like MDA5 and NXP2 which are closely related to viral defense or viral RNA interaction supporting the concept of infection and vaccination associated dermatomyositis.


Subject(s)
COVID-19 , Dermatomyositis , Interferon Type I , Autoantibodies , COVID-19/prevention & control , Humans , RNA, Viral , SARS-CoV-2 , Vaccination
3.
JMIR Form Res ; 6(6): e34566, 2022 Jun 03.
Article in English | MEDLINE | ID: covidwho-1910875

ABSTRACT

BACKGROUND: Besides anti-inflammatory medication, physical exercise represents a cornerstone of modern treatment for patients with axial spondyloarthritis (AS). Digital health apps (DHAs) such as the yoga app YogiTherapy could remotely empower patients to autonomously and correctly perform exercises. OBJECTIVE: This study aimed to design and develop a smartphone-based app, YogiTherapy, for patients with AS. To gain additional insights into the usability of the graphical user interface (GUI) for further development of the app, this study focused exclusively on evaluating users' interaction with the GUI. METHODS: The development of the app and the user experience study took place between October 2020 and March 2021. The DHA was designed by engineering students, rheumatologists, and patients with AS. After the initial development process, a pilot version of the app was evaluated by 5 patients and 5 rheumatologists. The participants had to interact with the app's GUI and complete 5 navigation tasks within the app. Subsequently, the completion rate and experience questionnaire (attractiveness, perspicuity, efficiency, dependability, stimulation, and novelty) were completed by the patients. RESULTS: The results of the posttest questionnaires showed that most patients were already familiar with digital apps (4/5, 80%). The task completion rates of the usability test were 100% (5/5) for the tasks T1 and T2, which included selecting and starting a yoga lesson and navigating to an information page. Rheumatologists indicated that they were even more experienced with digital devices (2/5, 40% experts; 3/5, 60% intermediates). In this case, they scored task completion rates of 100% (5/5) for all 5 usability tasks T1 to T5. The mean results from the User Experience Questionnaire range from -3 (most negative) to +3 (most positive). According to rheumatologists' evaluations, attractiveness (mean 2.267, SD 0.401) and stimulation (mean 2.250, SD 0.354) achieved the best mean results compared with dependability (mean 2.000, SD 0.395). Patients rated attractiveness at a mean of 2.167 (SD 0.565) and stimulation at a mean of 1.950 (SD 0.873). The lowest mean score was reported for perspicuity (mean 1.250, SD 1.425). CONCLUSIONS: The newly developed and tested DHA YogiTherapy demonstrated moderate usability among rheumatologists and patients with rheumatic diseases. The app can be used by patients with AS as a complementary treatment. The initial evaluation of the GUI identified significant usability problems that need to be addressed before the start of a clinical evaluation. Prospective trials are also needed in the second step to prove the clinical benefits of the app.

4.
BMC Rheumatol ; 5(1): 60, 2021 Dec 28.
Article in English | MEDLINE | ID: covidwho-1817296

ABSTRACT

BACKGROUND: Adult-onset Still's disease (AOSD) is an autoinflammatory multi-systemic syndrome. Macrophage activation syndrome (MAS) is a potentially life-threatening complication of AOSD with a mortality rate of 10-20%. Especially viral infection is thought to be a common trigger for development of MAS. On the other hand, the occurrence of MAS following vaccinations is extremely rare and has been described in a few cases after measles or influenza vaccinations and more recently after ChAdOx1 nCoV-19 (COVID-19 viral vector vaccine, Oxford-AZ). CASE PRESENTATION: We report the case of a twenty-year-old female with adult-onset Still's disease (AOSD), who developed a MAS six days after receiving her first COVID-19 vaccine dose of BNT162b2 (mRNA vaccine, BioNTech/Pfizer) with ferritin levels of 136,680 µg/l (ref.: 13-150 µg/l). CONCLUSIONS: To the best of our knowledge, this is the first case report of development of MAS in a patient with preexisting AOSD after vaccination in general, and SARS-CoV-2 vaccination in particular. The new mRNA vaccines have generally shown a reassuring safety profile, but it has been shown that nucleic acids in general, including mRNA can act as pathogen-associated molecular patterns that activate toll-like receptors with extensive production of pro-inflammatory cytokines and further activation of immune cells. Proving an interferon 1 response in our patient directly after vaccination, we think that in this particular case the vaccination might have acted as trigger for the development of MAS. Even if it remains difficult to establish causality in the case of rare adverse events, especially in patients with autoimmune or autoinflammatory conditions, these complications are important to monitor and register, but do not at all diminish the overwhelming positive benefit-risk ratio of licensed COVID-19 vaccines.

5.
Ann Rheum Dis ; 81(8): 1065-1071, 2022 08.
Article in English | MEDLINE | ID: covidwho-1807341

ABSTRACT

BACKGROUND: Remote care and telehealth have the potential to expand healthcare access, and the COVID-19 pandemic has called for alternative solutions to conventional face-to-face follow-up and monitoring. However, guidance is needed on the integration of telehealth into clinical care of people with rheumatic and musculoskeletal diseases (RMD). OBJECTIVE: To develop EULAR points to consider (PtC) for the development, prioritisation and implementation of telehealth for people with RMD. METHODS: A multidisciplinary EULAR task force (TF) of 30 members from 14 European countries was established, and the EULAR standardised operating procedures for development of PtC were followed. A systematic literature review was conducted to support the TF in formulating the PtC. The level of agreement among the TF was established by anonymous online voting. RESULTS: Four overarching principles and nine PtC were formulated. The use of telehealth should be tailored to patient's needs and preferences. The healthcare team should have adequate equipment and training and have telecommunication skills. Telehealth can be used in screening for RMD as preassessment in the referral process, for disease monitoring and regulation of medication dosages and in some non-pharmacological interventions. People with RMD should be offered training in using telehealth, and barriers should be resolved whenever possible.The level of agreement to each statement ranged from 8.5 to 9.8/10. CONCLUSION: The PtC have identified areas where telehealth could improve quality of care and increase healthcare access. Knowing about drivers and barriers of telehealth is a prerequisite to successfully establish remote care approaches in rheumatologic clinical practice.


Subject(s)
COVID-19 , Musculoskeletal Diseases , Telemedicine , Health Services Accessibility , Humans , Musculoskeletal Diseases/therapy , Pandemics
6.
Nat Rev Rheumatol ; 18(4): 187-188, 2022 04.
Article in English | MEDLINE | ID: covidwho-1704697

Subject(s)
Telemedicine , Humans
7.
Int J Environ Res Public Health ; 18(24)2021 12 13.
Article in English | MEDLINE | ID: covidwho-1596216

ABSTRACT

Despite all its promises, telemedicine is still not widely implemented in the care of rheumatic and musculoskeletal diseases (RMDs). The aim of this study is to investigate opportunities, barriers, acceptance, and preferences concerning telemedicine among RMD patients and professional stakeholders. From November 2017 to December 2019, a participatory, mixed-methods study was conducted, consisting of (1) expert interviews (n = 27) with RMD patients and professional stakeholders, (2) a national paper-based patient survey (n = 766), and (3) focus groups (n = 2) with patient representatives and rheumatologists. The qualitative findings indicate that patients equate personal contact with physical face-to-face contact, which could be reduced by implementing telemedicine, thus negatively influencing the patient-doctor relationship. Correspondingly "no personal contact with the doctor" is the main reason (64%) why 38% of the surveyed patients refuse to try telemedicine. Professional stakeholders expect telemedicine to contribute to the effective allocation of scarce resources in rheumatology care. The main barriers reported by stakeholders were the scarcity of time resources in RMD care, the absence of physical examinations, and organizational challenges associated with the implementation of telemedicine in RMD care. While the exact integration of telemedicine into routine care has yet to be found, the consequences on the patient-physician relationship must be permanently considered.


Subject(s)
Musculoskeletal Diseases , Rheumatology , Telemedicine , Focus Groups , Humans , Surveys and Questionnaires
9.
Rheumatol Int ; 41(6): 1187-1188, 2021 06.
Article in English | MEDLINE | ID: covidwho-1209707
10.
Int J Environ Res Public Health ; 18(5)2021 03 05.
Article in English | MEDLINE | ID: covidwho-1129722

ABSTRACT

The global COVID-19 pandemic has led to drastic changes in the management of patients with rheumatic diseases. Due to the imminent risk of infection, monitoring intervals of rheumatic patients have prolonged. The aim of this study is to present insights from patients, rheumatologists, and digital product developers on the ongoing digital health transition in rheumatology. A qualitative and participatory semi-structured fishbowl approach was conducted to gain detailed insights from a total of 476 participants. The main findings show that digital health and remote care are generally welcomed by the participants. Five key themes emerged from the qualitative content analysis: (1) digital rheumatology use cases, (2) user descriptions, (3) adaptation to different environments of rheumatology care, and (4) potentials of and (5) barriers to digital rheumatology implementation. Codes were scaled by positive and negative ratings as well as on micro, meso, and macro levels. A main recommendation resulting from the insights is that both patients and rheumatologists need more information and education to successfully implement digital health tools into clinical routine.


Subject(s)
COVID-19 , Rheumatology , Telemedicine , Health Transition , Humans , Pandemics , Qualitative Research , SARS-CoV-2
12.
Rheumatol Int ; 40(12): 2031-2037, 2020 12.
Article in English | MEDLINE | ID: covidwho-807383

ABSTRACT

Social media services, such as Twitter, offer great potential for a better understanding of rheumatic and musculoskeletal disorders (RMDs) and improved care in the field of rheumatology. This study examined the content and stakeholders associated with the Twitter hashtag #Covid4Rheum during the COVID-19 pandemic. The content analysis shows that Twitter connects stakeholders of the rheumatology community on a global level, reaching millions of users. Specifically, the use of hashtags on Twitter assists digital crowdsourcing projects and scientific collaboration, as exemplified by the COVID-19 Global Rheumatology Alliance registry. Moreover, Twitter facilitates the distribution of scientific content, such as guidelines or publications. Finally, digital data mining enables the identification of hot topics within the field of rheumatology.


Subject(s)
Coronavirus Infections/therapy , Pneumonia, Viral/therapy , Rheumatic Diseases/therapy , Social Media/statistics & numerical data , Betacoronavirus , COVID-19 , Cooperative Behavior , Global Health , Humans , Information Dissemination/methods , Pandemics , Rheumatology , SARS-CoV-2
13.
Ann Rheum Dis ; 79(9): 1139-1140, 2020 09.
Article in English | MEDLINE | ID: covidwho-596141

ABSTRACT

The COVID-19 pandemic forces the whole rheumatic and musculoskeletal diseases community to reassemble established treatment and research standards. Digital crowdsourcing is a key tool in this pandemic to create and distil desperately needed clinical evidence and exchange of knowledge for patients and physicians alike. This viewpoint explains the concept of digital crowdsourcing and discusses examples and opportunities in rheumatology. First experiences of digital crowdsourcing in rheumatology show transparent, accessible, accelerated research results empowering patients and rheumatologists.


Subject(s)
Biomedical Research/methods , Coronavirus Infections/therapy , Crowdsourcing/methods , Pneumonia, Viral/therapy , Rheumatology/methods , Betacoronavirus , Biomedical Research/standards , COVID-19 , Coronavirus Infections/virology , Crowdsourcing/standards , Humans , Pandemics , Pneumonia, Viral/virology , Rheumatology/standards , SARS-CoV-2
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