Psychological health in patients with amyotrophic lateral sclerosis

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease with no known effective treatment or cure. Clinicians often expect that ALS patients will experience depression following the diagnosis because ALS is a terminal disease. The objective of the current study was to examine the evidence from the literature on psychological health in ALS patients in order to determine the prevalence and severity of depression in this population. Twenty‐eight studies of ALS patients, conducted over the past 20 years, were reviewed and evaluated. The cumulative evidence suggests that clinically significant depression is neither as prevalent nor as severe as might be expected. Methodological limitations that are inherent to the measurement of depression in ALS, including the lack of appropriate instruments, small sample sizes, and reliance on cross‐sectional data, have contributed to the wide range of reported results. We conclude that ALS patients are more likely to present with hopelessness and end‐of‐life concerns than clinically significant depression. It is important to assess a broad range of potential psychological distress early in the course of ALS, rather than focus specifically on depression, because the manner in which patients cope with their disease can affect their longevity.

• Amyotrophic lateral sclerosis
• depression
• review

Notes

1. The descriptors ‘amyotrophic lateral sclerosis’, ‘motor neuron disease’, and ‘motor neurone disease’ are all used to refer to the same neuromuscular disease; in the present review, only the term ‘amyotrophic lateral sclerosis’ will be used.

2. Two additional articles that used the BDI and one that used the HADS did not report mean scores or standard deviations.

3. Alternatively, ecological momentary assessment, a technique in which the patient is given a small electronic device which prompts them to report on their mood at several different times over the course of the day, would be an excellent means of avoiding the retrospective recall biases which characterize self‐report instruments asking the patient to think about their mood over the previous week. No studies using this technique could be discovered in the current ALS literature.

4. It should be noted that the conclusions of the current review are meant to apply to those ALS patients without significant cognitive impairment.