BACKGROUND: The coronavirus disease (COVID-19) pandemic and its subsequent effects on health care systems have significantly impacted the management of chronic rheumatic diseases, including systemic sclerosis (SSc). METHODS: In this context, a 25-item anonymized e-survey was posted on the Twitter and Facebook e-groups and pages of various scleroderma organizations and patient communities to assess the problems faced by patients with SSc during the pandemic, with a focus on effects on the disease, drug procurance, continuity of medical care, and prevalent fears among patients. RESULTS: Of the 291 participants (median age of 55 [43.5-63] years, 93.8% females), limited systemic sclerosis was the most common diagnosis (42.3%). Many patients experienced problems attributable to the COVID-19 pandemic (119, 40.9%), of which 46 (38.7%) required an increase in medicines, and 12 (10.1%) of these needed hospitalizations for disease-related complications. More than one-third (36.4%) were on glucocorticoids or had underlying cardiovascular risks (39%) that would predispose them to severe COVID-19.A significant proportion (38.1%) faced hurdles in procuring medicines or experienced disruption in physiotherapy sessions (24.7%). One-quarter (24.1%) felt it was difficult to contact their specialist, whereas another 7.2% were unable to do so. Contracting COVID-19 was the most prevalent fear (71.5%), followed by infection in the family (61.9%), and a flare of the disease (45.4%). Most respondents preferred teleconsultations (55.7%) over hospital visits in the pandemic period. CONCLUSION: The results of the patient survey suggest that the COVID-19 pandemic has affected many patients with SSc and may translate to poorer outcomes in this population in the postpandemic period.
BACKGROUND: The coronavirus disease (COVID-19) pandemic and its subsequent effects on health care systems have significantly impacted the management of chronic rheumatic diseases, including systemic sclerosis (SSc). METHODS: In this context, a 25-item anonymized e-survey was posted on the Twitter and Facebook e-groups and pages of various scleroderma organizations and patient communities to assess the problems faced by patients with SSc during the pandemic, with a focus on effects on the disease, drug procurance, continuity of medical care, and prevalent fears among patients. RESULTS: Of the 291 participants (median age of 55 [43.5-63] years, 93.8% females), limited systemic sclerosis was the most common diagnosis (42.3%). Many patients experienced problems attributable to the COVID-19 pandemic (119, 40.9%), of which 46 (38.7%) required an increase in medicines, and 12 (10.1%) of these needed hospitalizations for disease-related complications. More than one-third (36.4%) were on glucocorticoids or had underlying cardiovascular risks (39%) that would predispose them to severe COVID-19.A significant proportion (38.1%) faced hurdles in procuring medicines or experienced disruption in physiotherapy sessions (24.7%). One-quarter (24.1%) felt it was difficult to contact their specialist, whereas another 7.2% were unable to do so. Contracting COVID-19 was the most prevalent fear (71.5%), followed by infection in the family (61.9%), and a flare of the disease (45.4%). Most respondents preferred teleconsultations (55.7%) over hospital visits in the pandemic period. CONCLUSION: The results of the patient survey suggest that the COVID-19 pandemic has affected many patients with SSc and may translate to poorer outcomes in this population in the postpandemic period.
Authors: Parikshit Sen; Latika Gupta; James B Lilleker; Vishwesh Aggarwal; Sinan Kardes; Marcin Milchert; Tamer Gheita; Babur Salim; Tsvetelina Velikova; Abraham Edgar Gracia-Ramos; Ioannis Parodis; Albert Selva O'Callaghan; Elena Nikiphorou; Ai Lyn Tan; Lorenzo Cavagna; Miguel A Saavedra; Samuel Katsuyuki Shinjo; Nelly Ziade; Johannes Knitza; Masataka Kuwana; Giovanni Cagnotto; Arvind Nune; Oliver Distler; Hector Chinoy; Vikas Aggarwal; Rohit Aggarwal Journal: Rheumatol Int Date: 2021-11-15 Impact factor: 2.631
Authors: Khadija El Aoufy; Maria Ramona Melis; Silvia Bellando Randone; Jelena Blagojevic; Francesca Bartoli; Ginevra Fiori; Francesca Nacci; Maria Letizia Conforti; Laura Cometi; Cosimo Bruni; Martina Orlandi; Alberto Moggi-Pignone; Laura Rasero; Serena Guiducci; Marco Matucci-Cerinic Journal: Clin Rheumatol Date: 2021-11-05 Impact factor: 2.980
Authors: Steffen Akkermann; Tim Halling; Friederike Löffler; Ann S Silber-Peest; Tillmann Krüger; Stefan Bleich; Johann Bauersachs; Kai G Kahl; Mechthild Westhoff-Bleck Journal: Front Psychiatry Date: 2022-03-17 Impact factor: 4.157
Authors: Anna-Maria Hoffmann-Vold; Oliver Distler; Cosimo Bruni; Christopher P Denton; Jeska de Vries-Bouwstra; Marco Matucci Cerinic; Madelon C Vonk; Armando Gabrielli Journal: Lancet Rheumatol Date: 2022-07-21