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

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.

Quality Of Life in Female Patients with Systemic Sclerosis

“…On the other hand, van Leeuwen et al (18) in their multivariable analysis found that contrary to expectations, the existence of ILD had no effect on HRQoL over time. It is possible that this is due to the fact that not all SSc-ILD patients suffer symptoms that are directly linked to ILD.…”

“…Also, van Leeuwen et al (18) noted that HRQoL-related to SSc is adversely affected by extensive GI involvement. However, Laeubli et al (19) stated that the overall burden of GIT symptoms in SSc patients on quality of life was mild.…”

Unmet Medical Needs in Chronic, Non-communicable Inflammatory Skin Diseases

“…In addition, health-related quality of life is significantly lower in patients with SSc compared to healthy controls ( 358 ) and compared to other autoimmune diseases ( 359 ). The involvement of the gastrointestinal tract, pulmonary arterial hypertension, Raynaud's phenomenon and digital ulcers represent disease manifestations that affect the quality of life of patients ( 360 ). In addition, symptoms such as pain, dyspnea or impaired hand function are frequently reported by the patients as determinants for the quality of life.…”

Recommendations from the Medical Education Editor

“…Patients with SSc experience a significant reduction in quality of life, and those with ILD have a significantly reduced survival. 7,8 However, published data are scarce on the healthcare and other costs of this diagnosis. Direct costs to patients and healthcare systems might include the costs of diagnostic testing, medications, inpatient and outpatient care, or provision of aids and equipment.…”

“…Patients with SSc experience a significant reduction in quality of life, and those with ILD have a significantly reduced survival 7,8 . However, published data are scarce on the healthcare and other costs of this diagnosis.…”