Abstract
Neuromuscular diseases (NMD) are frequently characterized by a progressive clinical course leading to disability, which has an impact also on the quality of life. To date, there is no evidence if the severity of disability has a real correlation with NMD patients’ satisfaction in the activities of daily living (ADL). The aim of our study was to assess if a correlation exists between life satisfaction and disability in patients with NMD. We enrolled adult patients with NMD (age > 18 years) who referred to our unit and who were collaborative to answer to our questionnaires. We evaluated the severity of disability with the ACTIVLIM, a self-reported questionnaire that has been validated in order to quantify the activity limitations of patients with NMD. Concerning patients’ life satisfaction, we administered the LiSat-11, a self-reported questionnaire. Each of the 11 domains is evaluated using a 6-point scale, dichotomized into 1–4 (dissatisfied) and 5–6 (satisfied). To calculate the correlation between the ACTIVLIM and the LiSat-11, we used the Spearman's coefficient, with a significant P value < 0.05. We included 30 patients, with a mean age of 47.3 ± 19.9 years. ACTIVLIM median score (± SE) was 1.144 ± 0.21. LiSat-11 median score was 4.5 (variance 0.81). The results showed no correlation between the ACTIVLIM and LiSat-11 ( r = 0.033, P > 0.05). Concerning the median scores of each LiSat domain, only the items regarding life as a whole, economy, contact with friends, ADL, family life and psychological health showed a satisfactory result (median = 5); the domain with the lowest median score was physical health (median = 3). Our study shows that there is no correlation between the severity of disability and the patients’ satisfaction in NMD patients, underlining that the effective disability may not correspond to patients’ perception of reality and to their needs. Moreover, the social and psychological domains seem to have a higher satisfaction.
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