Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Observational Study
. 2021 Aug 2;60(8):3646-3655.
doi: 10.1093/rheumatology/keaa827.

Health-related quality of life in patients with systemic sclerosis: evolution over time and main determinants

Nina M van Leeuwen  1 , Jacopo Ciaffi  2 , Sophie I E Liem  1 , Tom W J Huizinga  1 , Jeska K de Vries-Bouwstra  1
Affiliations
Observational Study

Health-related quality of life in patients with systemic sclerosis: evolution over time and main determinants

Nina M van Leeuwen et al. Rheumatology (Oxford). .

Abstract

Objectives: In SSc patients, disease specific determinants that influence health-related quality of life (HRQoL) over time have not been described. We aim to, in patients with SSc, (i) evaluate if and how HRQoL changes over time, and (ii) assess how different SSc domains and functional impairments contribute to changes in HRQoL over time.

Methods: All SSc patients from the Leiden SSc cohort were included; patients with disease duration <24 months were classified as incident cases. HRQoL was assessed prospectively on an annual basis using the EQ-5D and the SF36. To assess baseline associations between clinical characteristics and HRQoL, linear regressions were performed. To identify possible associations between SSc characteristics and HRQoL change over time, linear mixed models were performed in both incident and prevalent cases.

Results: In total, 492 SSc patients were included (n = 202 incident cases), with a median follow-up duration of 3.4 years. At baseline, presence of organ involvement was independently associated with a worse SF36 physical component score and lower EQ-5D score. Over time, gastrointestinal symptoms, Raynaud and digital ulcers were independently associated with deterioration of HRQoL in both incident and prevalent cases. In prevalent cases, pulmonary arterial hypertension (PAH) was associated with a decrease in HRQoL over time. Worse functioning as measured by six-min walking distance, mouth-opening, finger-to-palm distance and grip-strength contributed significantly to deterioration of HRQoL over time.

Conclusion: In SSc, key clinical burdens that contribute to worsening of HRQoL over time include digital ulcers, Raynaud and gastrointestinal involvement. In addition, PAH is a significant burden in prevalent disease.

Keywords: impairment; organ involvement; quality of life; systemic sclerosis.

PubMed Disclaimer

Figures

<sc>Fig</sc>. 1
Fig. 1
Mean scores over time of the EQ-5D and both component scores of the SF35 (MCS: mental component score; PCS: physical component score) in the incident and prevalent cases
See this image and copyright information in PMC

References

    1. Gabrielli A, Avvedimento EV, Krieg T.. Scleroderma. NEJM 2009;360:1989–2003. - PubMed
    1. Denton CP, Khanna D.. Systemic sclerosis. Lancet 2017;390:1685–99. - PubMed
    1. Wollheim FA. Classification of systemic sclerosis. Visions and reality. Rheumatology 2005;44:1212–6. - PubMed
    1. Hudson M, Thombs BD, Steele R; for the Canadian Scleroderma Research Group et al.Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions. J Rheumatol 2009;36:768–72. - PubMed
    1. Park EH, Strand V, Oh YJ, Song YW, Lee EB.. Health-related quality of life in systemic sclerosis compared with other rheumatic diseases: a cross-sectional study. Arthritis Res Ther 2019;21:61. - PMC - PubMed

Publication types