ABSTRACT
OBJECTIVE: We performed a scoping review of the relevant literature on home-based telehealth in rheumatology to understand its appropriate application in rheumatology practice. METHODS: We searched the Cochrane Library, PubMed, Web of Science, and scientific meeting abstracts to identify articles that specifically addressed telehealth suitability, barriers to telehealth, patient-reported outcomes (PROs) collected in telehealth settings, and telehealth satisfaction. From the initial search of 4,882 studies, 23 reports were included. In addition, 10 abstracts were also eligible for analysis, resulting in a total of 33 articles: 2 randomized clinical trials, 9 prospective cohort studies, and 22 retrospective studies. RESULTS: We found that triage appointments or predictive models could be helpful in selecting patients for telehealth and that telehealth interventions were appropriate for follow-up of patients with systemic lupus erythematosus and inflammatory arthritis, but that conducting new patient visits over telehealth was not ideal. Barriers to telehealth include patient factors (age, technology access) and need for physician/process factors (eg, physical examinations). PROs collected in regular practice can be incorporated into telehealth. Several small, single-center studies suggest that telehealth does not lead to negative outcomes compared with in-person visits, and overall, patients report high patient satisfaction with telehealth. In several scenarios, home-based telehealth was equivalent to in-person visits with regard to patient outcomes and satisfaction. CONCLUSION: The widespread potential of telehealth to manage and deliver care for people with rheumatic disease is significant. As such, further research in the form of randomized controlled trials can help contribute to growing evidence that shapes telehealth implementation for patients with rheumatic diseases.
ABSTRACT
OBJECTIVE: Patient communities use social media for peer support and information seeking. This study assessed the feasibility of using public patient-generated health data from the social network Twitter to identify diverse lupus patients and gather their perspectives about disease symptoms and medications. METHODS: We extracted public lupus-related Twitter messages (n = 47,715 tweets) in English posted by users (n = 8,446) in the US between September 1, 2017 and October 31, 2018. We analyzed the data to describe lupus patients and the expressed themes (symptoms and medications). Two independent coders analyzed the data; Cohen's kappa coefficient was used to ensure interrater reliability. Differences in symptom and medication expressions were analyzed using 2-tailed Z tests and a combination of 1-way analysis of variance tests and unpaired t-tests. RESULTS: We found that lupus patients on Twitter are diverse in gender and race: approximately one-third (34.64%, 62 of 179) were persons of color (POCs), and 85.47% were female. The expressed disease symptoms and medications varied significantly by gender and race. Most of our findings correlated with documented clinical observations, e.g., expressions of general pain (8.39%, 709 of 8,446), flares (6.05%, 511 of 8,446), and fatigue (4.18%, 353 of 8,446). However, our data also revealed less well-known patient observations, e.g., possible racial disparities within ocular manifestations of lupus. CONCLUSION: Our results indicate that social media surveillance can provide valuable data of clinical relevance from the perspective of lupus patients. The medical community has the opportunity to harness this information to inform the patient-centered care within underrepresented patient groups, such as POCs.
