Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

Abstract

Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL.

Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL.

Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1-40.6; mental SF-36: 44.4; 95% CI: 43.5-45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5-47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL.

Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers' HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context.

Keywords: caregivers; health-related quality of life; multiple sclerosis.

Figure 1

Interpretation of physical and mental health summary scales of MS patients and their caregivers. Notes: Vertical lines on each bar represent their 95% confidence intervals (see Table 3 for exact values). If they are not including the value of the norm, the difference between the study sample and the general population is statistically significant.

Figure 2

Explanatory factors for the physical domain of HRQoL in patients with MS (SF-36 Physical Health Summary Scale). Notes: < Gral P, Proportion of patients presenting lower HRQoL (physical domain) than general population; = Gral P, Proportion of patients presenting the same HRQoL (physical domain) than general population; > Gral P, Proportion of patients presenting higher HRQoL (physical domain) than general population; In parentheses, number of patients included in each category. Abbreviations: DF, degrees of freedom; HRQoL, health-related quality of life.

Figure 3

Explanatory factors for the mental domain of HRQoL in family caregivers (SF-12 Mental Health Summary Scale). Notes: < Gral P, Proportion of patients presenting lower HRQoL (mental domain) than general population; = Gral P, Proportion of patients presenting the same HRQoL (mental domain) than general population; > Gral P, Proportion of patients presenting higher HRQoL (mental domain) than general population; In parentheses, number of caregivers included in each category. Abbreviations: DF, degrees of freedom; HRQoL, health-related quality of life.