Patient preference disability questionnaire in systemic sclerosis: a cross-sectional survey

Area of Science:

• Rheumatology
• Patient-Reported Outcomes
• Disability Assessment

Background:

• Systemic sclerosis (SSc) is a chronic autoimmune disease characterized by widespread vascular damage and fibrosis.
• Assessing patient priorities regarding disability is crucial for effective management and improving quality of life in SSc patients.

Purpose of the Study:

• To evaluate patient priorities concerning disability in systemic sclerosis (SSc).
• To assess the construct validity of the McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) in SSc patients.
• To identify factors associated with patients' global health perception.

Main Methods:

• 150 SSc patients were evaluated using the MACTAR, Karnofsky performance status (KPS), Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Hospital Anxiety and Depression Scale, and Mouth Handicap in SSc (MHISS) scale.
• Correlations between scores were analyzed using Spearman's coefficient.
• Logistic regression analysis identified factors associated with patients' global health perception.

Main Results:

• Walking (54.6%), housekeeping (44.6%), and sports activities (39.3%) were the most frequently cited disability domains.
• The MACTAR score showed moderate correlation with KPS (r=0.58) and weak correlation with HAQ (r=0.38).
• KPS (OR 1.07) and MHISS score (OR 0.93) were associated with negative global health perception.

Conclusions:

• The MACTAR questionnaire demonstrates acceptable construct validity for assessing disability priorities in SSc patients.
• The MACTAR provides valuable information on disability, complementing other measures like the HAQ.
• Patient-reported disability domains and factors influencing health perception are key considerations in SSc management.