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Faculty of Medical Sciences

An Assessment Of The Health-Related Quality Of Life In Patients With Systemic Sclerosis

Najar, B. (Ban) (2018) An Assessment Of The Health-Related Quality Of Life In Patients With Systemic Sclerosis. thesis, Medicine.

Full text available on request.

Abstract

Background: Systemic sclerosis (SSc) is characterized by severe, generalized, and often progressive cutaneous and visceral organ fibrosis. Its pathogenesis comprises of vascular dysfunction, of which Raynaud phenomenon (RP) being one of the most characteristic, visible, and early vascular manifestations, in which the fingers sequentially change in colour from white (ischemia) to blue (hypoxia) and finally to red (reperfusion). RP is often experienced as the earliest manifestation of disease in SSc, with other systemic symptoms occurring up to years later. Organ involvement often involves the lungs, gastrointestinal tract, and renal involvement. Digital ulceration is a painful consequence of RP, which decreases the health-related quality of life (HRQoL) of SSc patients. Bosentan has been shown to prevent recurrent ulcers, and thus we hypothesized that not only is there a reduced HRQoL when comparing SSc patients with healthy controls, but that short-term treatment with bosentan would lead to an improvement in the HRQoL. Finally, we hypothesized that there were a number of patient-specific variables that correlated with a decrease in the HRQoL. Methods and results: A case-control study investigating 19 SSc patients and 20 gender- and age-matched healthy controls was performed. Data on HRQoL was collected using the SF-36 questionnaires and HAQ at baseline and three months. At baseline, we found that SSc patients scored significantly lower in the HAQ and seven of the eight SF-36 questionnaire domains. Physical health related domains were reported to be lower than those relating to mental health. Furthermore, when looking at the change in the difference of scale scores at three months in SSc patients receiving bosentan versus those using the usual care only, we found no significant differences in this change. Variables that were correlated with the scale scores were the gender, age, smoking, disease duration, presence of co-morbidities, organ involvement, digital ulcers, and the ACR/EULAR score. No significant correlations were found. We did however see a trend when correlating disease duration with role limitations due to physical health (r = 0.390, p = 0.099), and smoking with role limitations due to mental health (r = -0.405, p = 0.085). Conclusion: This study has confirmed the reduced HRQoL in SSc patients compared to healthy controls. Furthermore, bosentan was not shown to have a significantly positive effect on the HRQoL after short-term use (three months). Finally, we found no significant relationships between various patient- and disease-related variables and their effect on the reported HRQoL. To conclude, clinicians prescribing bosentan should make clear to SSc patients that although bosentan will have a positive effect in preventing recurrent digital ulcers, they must not have unrealistic expectations of the possible improvement it may have on their HRQoL.

Item Type: Thesis (Thesis)
Supervisor name: Faculty Supervisor: and Mulder, D.J. and University Medical Center Groningen (UMCG) and Department of Vascular Medicine
Faculty: Medical Sciences
Date Deposited: 25 Jun 2020 10:53
Last Modified: 25 Jun 2020 10:53
URI: https://umcg.studenttheses.ub.rug.nl/id/eprint/1360

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