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

Abstract

Abstract[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.

Volume loss in the left anterior‐superior subunit of the hypothalamus in amyotrophic lateral sclerosis

“…Furthermore, our findings contribute to the increasing body of evidence that ALS is not exclusively a motor neuron disease (MND), but also encompasses non-motor/extra-motor symptoms. 2,[29][30][31][32][33][34] The absence of significant differences in demographic parameters such as age, sex, and BMI between patients with ALS and HCs in our sample provided a level of homogeneity, allowing for a more precise interpretation of the differences in hypothalamic volumes attributable to ALS pathology rather than confounding demographic variables.…”

Prevalence and correlates of fatigue in amyotrophic lateral sclerosis: A systematic review and meta-analysis

“…Of which, 10 studies did not report the prevalence of fatigue. Among the studies that reported fatigue prevalence, six studies did not provide criteria for defining ALS patients [21][22][23][24][25][26], six studies relied on patient self-report of fatigue presence without using a validated measure [27][28][29][30][31][32], two studies did not establish a specific cut-off value [12,33], one study used a physiological measurement [34], and one study had the same participants of an included study [35]. Finally, 11 studies with 1072 ALS patients met the inclusion criteria and were included in this review [7,9,[36][37][38][39][40][41][42][43][44].…”