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. 2021 Jun;6(2):133-138.
doi: 10.1177/2397198321999927. Epub 2021 Mar 16.

Impact of Covid-19 on clinical care and lived experience of systemic sclerosis: An international survey from EURORDIS-Rare Diseases Europe

Michael Hughes  1 , John D Pauling  2   3 , Andrew Moore  4 , Jennifer Jones  5
Affiliations

Impact of Covid-19 on clinical care and lived experience of systemic sclerosis: An international survey from EURORDIS-Rare Diseases Europe

Michael Hughes et al. J Scleroderma Relat Disord. 2021 Jun.

Abstract

Introduction: Outcomes related to Covid-19 in systemic sclerosis patients could be influenced by internal organ involvement and/or immunosuppressive treatment, leading to efforts to shield patients from Covid-19 transmission. We examined the impact of Covid-19 on the lived experience of systemic sclerosis with regards to other aspects of daily living including occupation and emotional well-being.

Method: Individuals with systemic sclerosis or relatives/carers participated in an online survey, disseminated through international patient associations and social media pages, designed to examine the impact of Covid-19 on living with a rare disease.

Results: Responses from 121 individuals (98% were patients with systemic sclerosis) from 14 countries were evaluable. Covid-19 was considered a probable/definite personal threat (93%) or threat for the individual they care for (100%). Approximately two-thirds of responders reported either cancellation or postponement/delay to appointments, diagnostic tests, medical therapies at home (e.g. infusions), surgery or transplant, psychiatry follow-up or rehabilitation services. Twenty-six percent reported at least one systemic sclerosis medicine/treatment had been unavailable, and 6% had to either stop taking usual medications or use an alternative. Most reported online consultations/telemedicine via phone (88%) and online (96%) as being 'fairly' or 'very' useful. Respondents reported tensions among family members (45%) and difficulty overcoming problems (48%). Restrictions on movement left around two-thirds feeling isolated (61%), unhappy and/or depressed (64%), although the majority (85%) reported a strengthening of the family unit.

Conclusion: Covid-19 has resulted in significant impact on the clinical-care and emotional well-being of systemic sclerosis patients. Changes to clinical care delivery have been well-received by patients including telemedicine consultations.

Keywords: Covid-19; Systemic sclerosis; clinical-care; emotional well-being; scleroderma; telemedicine.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: M.H. has received speaker honoraria (<$10,000) from Actelion pharmaceuticals. J.J.’s work at Genetic Alliance UK is supported through a partnership agreement with Alexion. J.P. has received speaker’s honoraria and research grant support (>$10,000) from Actelion pharmaceuticals. He has undertaken consultancy work for Actelion pharmaceuticals, Sojournix Pharma and Boehringer Ingelheim. The remaining author has no conflicts to declare.

Figures

Figure 1.
Figure 1.
Reported interruption in aspects of usual clinical care provided by healthcare professionals for patients with SSc since the beginning of the Covid-19 pandemic.
Figure 2.
Figure 2.
Impact on patients with SSc emotional well-being since the beginning of the Covid-19 pandemic.
See this image and copyright information in PMC

References

    1. Bassel M, Hudson M, Taillefer SS, et al. Frequency and impact of symptoms experienced by patients with systemic sclerosis: results from a Canadian National Survey. Rheumatology 2011; 50(4): 762–767. - PubMed
    1. Denton CP, Khanna DK. Systemic sclerosis. Lancet 2017; 390(10103): 1685–1699. - PubMed
    1. Park EH, Strand V, Oh YJ, et al. Health-related quality of life in systemic sclerosis compared with other rheumatic diseases: a cross-sectional study. Arthritis Res Ther 2019; 21(1): 61. - PMC - PubMed
    1. Moore DF, Steen VD. Overall mortality. J Scleroderma Relat Disord. Epub ahead of print 8 June 2020. DOI: 10.1177/2397198320924873. - DOI - PMC - PubMed
    1. Humbert M, Yaici A, de Groote P, et al. Screening for pulmonary arterial hypertension in patients with systemic sclerosis: clinical characteristics at diagnosis and long-term survival. Arthritis Rheum 2011; 63(11): 3522–3530. - PubMed