Clinical and psychosocioeconomic impact of COVID-19 pandemic on patients of the Indian Progressive Systemic Sclerosis Registry (IPSSR)

Abstract

Objectives The aim was to determine the impact of the coronavirus disease 2019 (COVID-19) pandemic on access to health care among patients with scleroderma and to analyse the economic and psychosocial impacts and the infection prevention measures taken by them during the pandemic. Methods A 25-item questionnaire designed to assess the components of the objectives was tele-administered between October 2020 and January 2021 to the patients enrolled in the Indian Progressive Systemic Sclerosis Registry. Results Of the 428 patients in the registry, 336 took part in the study. A scheduled outpatient visit was missed by 310 (92.3%) patients, and 75 (22.3%) skipped prescription drugs. During the pandemic, 75 (22.3%) had a family member lose a job. Financial difficulties were reported by 155 (46.1%), with 116 (34.5%) patients having to spend an additional INR 4000 (2000–10 000) [USD 54.9 (27.0–137.4)] to continue treatment. Although 35 patients (10.4%) had at least one symptom suggestive of COVID-19, infection was confirmed in only 4. None of them needed hospitalization or had adverse outcomes. Worsening of scleroderma was seen in 133 (39.6%) individuals, with 15 (4.5%) requiring hospitalization. Most (96%) of the patients were aware of infection prevention measures, and 91 (27.1%) had taken unproven prophylactic medications. Conclusion Individuals with scleroderma in India have been affected during the pandemic owing to closure of hospital services, lack of transport, loss of jobs and the additional financial burden. Health-care providers should continue to educate patients to stay on their medications and encourage them to be vaccinated for COVID-19.

Short term outcomes of COVID-19 in lupus: Propensity score matched analysis from a nationwide multi-centric research network

“…One of the main challenges faced by individuals with RMDs during the pandemic was the inability to access routine health care [ 24 , 25 ] and the lack of information about continuing immunosuppressive agents [ 26 ]. This resulted in drug discontinuation in a substantial proportion of patients [ [27] , [28] , [29] ], which predisposes to a flare of the underlying RMD. A second hit in the form of COVID-19 infection may potentially portend poorer prognosis in those with uncontrolled RMD and may have resulted in higher hospitalisation.…”

Effect of skin phototype on quantitative nailfold capillaroscopy

“…The assessors are rheumatology trainees with more than 1 year of experience in routinely performing NFC examination in clinics and are a part of the Indian Progressive Systemic Sclerosis Registry (IPSSR). 18 For this study, they additionally underwent training with 20 dummy cases each before being assigned the task of reporting findings.…”

Psychological Fragility in an Italian Cohort of Systemic Sclerosis Patients During COVID-19 Pandemic Category: Short Communication

“…11 Similar results emerged from Indian Progressive Systemic Sclerosis Registry, where the pandemic fear was a cause of missed outpatients visits and job loss was found associated to a self-reported worsening of disease. 14 Another work from the SPIN COVID-19 cohort showed that variables associated with COVID-19 fear were interference of breathing problems in daily activities, financial resources inadequacy, and high levels of previous anxiety. 13 Our study identifies for the first-time higher amounts of COVID-19-related fear and generalized anxiety disorder symptoms in the subgroup of SSc patients who missed regular visits, evidenced by validated questionnaires.…”

“…13 Pandemic fear was described by patients as a major cause of missed outpatient visits, as emerged from a tele-survey of Indian Progressive Systemic Sclerosis Registry. 14 For SSc patients, assiduous follow-up is essential to prevent or limit disease multi-organ involvement through appropriate diagnostic and therapeutic tools to achieve a better disease outcome. 15 Anxiety and fear due to COVID-19 thus emerged as marking psychological fragility in SSc patients in the course of the current pandemic.…”