The evaluation of pain in amyotrophic lateral sclerosis: A case controlled observational study

AbstractAmyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder leading to progressive paralysis. ALS is complicated by a number of non-motor symptoms including pain. Pain in ALS has been poorly studied and poorly managed. This study aimed to collate information regarding pain in ALS using standardized pain questionnaires. Forty-two patients with ALS participated in the study. Control subjects included 41 age-matched healthy volunteers and 42 age-matched patients with neurological conditions other than ALS. Data on pain were collected using the The Brief Pain Inventory and The painDetect Questionnaire. Eighty-five percent of subjects with ALS reported pain versus 50% of neurology clinic controls and 35% of healthy controls (p < 0.01). Pain in ALS included cramping, aching, tiring, sharp and tender, and was non-neuropathic. Pain impacted significantly on mood, general activity, relationships and general enjoyment of life. Fifty-four percent of people with painful ALS used regular analgesia and 29% regular opioids. Other non-motor symptoms suffered included tiredness, constipation, urinary problems, itching and drowsiness. In conclusion, these data support the fact that pain is a significant symptom in ALS which impacts on quality of life. These data can be used to educate clinicians and patients to promote better multidisciplinary management of ALS symptoms and a better quality of life.Key words:: Amyotrophic lateral sclerosispainnon-motor symptoms AcknowledgementsPermission to use the BPI was granted by Charles Cleeland, Anderson Cancer Center, TX. Salary support was provided for AAC and CES: this is an EU Joint Programme – Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the aegis of JPND – www.jpnd.eu (United Kingdom, Medical Research Council (AAC, CES) and Economic and Social Research Council (AAC)). AAC and CES also receive salary support from the National Institute for Health Research (NIHR) Dementia Biomedical Research Unit and Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The work leading up to this publication was funded by the European Community's Health Seventh Framework Programme. We thank the Motor Neurone Disease Association of England, Wales and Northern Ireland, and the ALS Association. We thank Matthew Howard and Mick Thacker of Kings College London for advice on experimental design.Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.