We all know that MS is a bad disease with a massive socio-economic impact. However, the personal toll is even larger. Reduced life expectancy, higher suicide rates, unemployment, high divorce rates, depression, anxiety, fatigue, substance abuse, cognitive impairment, loneliness, social isolation and poverty are just a few of things that can and do happen to pwMS.
One I have not discussed before is apathy, which is common in MS and is part of a symptom complex in people with more advanced MS. PwMS who are apathetic simply lose interest and have no enthusiasm for life and interventions to help them. Apathy is not necessarily depression. In this cross-sectional Italian study, a third of respondents were apathetic. This is much higher than I would have predicted but may explain why pwMS as a group are not as activated as other disease-specific communities, i.e. MS has shredded that part of the brain that motivates them to do things.
I would add that if you are reading this blog post you are unlikely to be suffering from apathy. It is the pwMS who don’t read this blog that worry me. As apathy predicts poor outcome in MS we should add it to the prognostic profile calculator we use to profile MS patients in terms of treatment decisions. PwMS who are apathetic should also be considered as being at high risk of complications and hence should be seen more often.
Apathy is another reason to treat MS early and effectively.
Raimo et al. Assessing apathy in multiple sclerosis: Validation of the dimensional apathy scale and comparison with apathy evaluation scale. Mult Scler Relat Disord. 2019 Nov 25;38:101870.
BACKGROUND: Apathy is a predictor of cognitive decline in the course of multiple sclerosis (MS). Early identification of apathetic patients is relevant in clinical settings.
OBJECTIVE: To assess the applicability and psychometric properties of the self-rated version of the Dimensional Apathy Scale (DAS) in a large cohort of patients with MS and to compare its diagnosing accuracy with that of the Apathy Evaluation Scale (AES).
METHODS: One hundred and twenty-four patients underwent a clinical interview based on diagnostic criteria for apathy, DAS, AES, and assessment of depression, global cognitive functioning, and non-verbal intelligence.
RESULTS: According to diagnostic criteria, apathy occurred in 33.4% of the patients. The DAS showed high consistency, and good convergent, discriminant and criterion validity. Factor analysis indicated a three-factor structure: executive, behavioural and emotional apathy. Unlike AES, no significant association between DAS score and severity of neurological disability (expressed by EDSS total score) was found, suggesting that the DAS might be less related to levels of disability. Receiver operating characteristics analyses, with clinical diagnostic criteria for apathy as the gold standard, revealed that a DAS score of 28/29 and an AES score of 35/36 were optimal cut-off values for identifying clinically relevant apathy. The two scales had similar diagnostic accuracy in the present sample.
CONCLUSIONS: The DAS is a valid and reliable multidimensional tool to assess apathy in MS, with diagnostic accuracy similar to that of the AES. However, the DAS score appears to be less strongly related to neurological disability.