Investigation of non-motor symptoms in patients with amyotrophic lateral sclerosis

[Objective] Few studies have comprehensively investigated the non-motor symptoms of amyotrophic lateral sclerosis (ALS).

We aimed to investigate this aspect of ALS.

[Methods] We held a nationwide webinar, titled “ALS Café,” and distributed self-report questionnaires to ALS patients.

In addition to the frequency of non-motor symptoms such as fatigue, pain, sleep disorders, defecation disorders, sialorrhea, and sexual problems, we evaluated the quality of life (QoL), ALS Functional Rating Scale-Revised (ALSFRS-R), and Patient Health Questionnaire-9 (PHQ-9).

[Results] The average age of the 33 respondents (19 male, 14 female) was 60.8 ± 11.2; 96.7% of respondents had some non-motor symptoms.

The median ALSFRS-R was 32.0, and seven (21.2%) of the respondents had a PHQ-9 score of 10 or higher.

Fatigue was the most common non-motor symptom (81.8%), followed by pain (60.6%), defecation disorders (57.6%), sleep disorders (48.5%), sialorrhea (48.5%), and sexual problems (24.2%).

Fatigue was more frequent in females ( P  = 0.03).

Among the non-motor symptoms, pain was the most common factor affecting QoL, followed by fatigue.

More than 90% of ALS patients answered that they had never consulted a physician/counselor about sexual problems.

Patients with pain had higher PHQ-9 scores than those without ( P  = 0.01).

There was no correlation between the ALSFRS-R score and QoL and PHQ-9.

[Conclusions] Most patients with amyotrophic lateral sclerosis had non-motor symptoms, and fatigue and pain were the most common.

We showed that many non-motor symptoms affected QoL without correlating with ALSFRS-R score.

Attention should be paid to those even if the motor symptoms of ALS are mild.