Takehisa Hirayama1, Mari Shibukawa1, Masaru Yanagihashi1, Hitoshi Warita2, Naoki Atsuta3, Koji Yamanaka4, Osamu Kano5. 1. Department of Neurology, Faculty of Medicine, Toho University, Tokyo, Japan. 2. Department of Neurology, Tohoku University Hospital, Sendai, Japan. 3. Department of Neurology, Aichi Medical University School of Medicine, Nagakute, Japan. 4. Department of Neuroscience and Pathobiology, Research Institute of Environmental Medicine, Nagoya University, Nagoya, Japan. 5. Department of Neurology, Faculty of Medicine, Toho University, Tokyo, Japan. osamu.kano@med.toho-u.ac.jp.
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.
[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.
Authors: James D Berry; Sabrina Paganoni; Kenzie Carlson; Katherine Burke; Harli Weber; Patrick Staples; Joel Salinas; James Chan; Jordan R Green; Kathryn Connaghan; Josh Barback; Jukka Pekka Onnela Journal: Ann Clin Transl Neurol Date: 2019-04-03 Impact factor: 4.511
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