title: Pain in amyotrophic lateral sclerosis: Patient and physician perspectives and practices.
abstract: Our objective was to better understand the experience and impact of pain on ALS patients in the U.S., and to survey ALS physicians on their pain assessment and management practices. Individuals with ALS were invited to complete an online survey of pain in ALS. ALS specialist physicians were sent an e-mail survey about their experiences in evaluating and managing patients' pain. Nearly 75% of patients with ALS reported significant pain, and most thought that ALS was the source of at least some of this pain. Pain intensity scores (mean 3.9/10) and pain interference scores (mean 4.3/10) were moderate on average, but nearly 80% of participants were using pain medication, including 22% using opioids. Nearly 25% of patients thought they needed stronger pain medication than they were receiving. Physicians generally assess and manage pain in ALS patients, but few use standardized assessment tools. Nearly two-thirds felt that there is a need for better pain management practices and more than one-third felt better training was needed. In conclusion, pain in patients with ALS is not always well controlled. Improvement in care may be facilitated by a more standardized approach to evaluation, and by additional education and training of ALS health care professionals.
authors.affiliation: a Department of Neurology.
authors.forename: Helen E
authors.initials: HE
authors.lastname: Stephens
authors.affiliation: b Department of Public Health Sciences.
authors.forename: Erik
authors.initials: E
authors.lastname: Lehman
authors.affiliation: a Department of Neurology.
authors.forename: Divisha
authors.initials: D
authors.lastname: Raheja
authors.affiliation: b Department of Public Health Sciences.|d Office For Scholarship in Learning and Education Research, The Pennsylvania State University College of Medicine , Hershey , Pennsylvania and.
authors.forename: Chengwu
authors.initials: C
authors.lastname: Yang
authors.affiliation: e ALS Association Greater Philadelphia Chapter , Ambler , Pennsylvania.
authors.forename: Susan
authors.initials: S
authors.lastname: Walsh
authors.affiliation: f Community and Systems Health Science Division University of Arizona College of Nursing , Tucson , Arizona , USA.
authors.forename: Donna B
authors.initials: DB
authors.lastname: Mcarthur
authors.affiliation: a Department of Neurology.|c Department of Humanities and.
authors.forename: Zachary
authors.initials: Z
authors.lastname: Simmons
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology*; D001291:Attitude of Health Personnel; D015897:Comorbidity; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000453:epidemiology*; D059408:Pain Management / Q000379:methods / Q000706:statistics & numerical data*; D010147:Pain Measurement / Q000379:methods / Q000706:statistics & numerical data*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D010818:Practice Patterns, Physicians' / Q000706:statistics & numerical data; D015995:Prevalence; D011788:Quality of Life; D012307:Risk Factors; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology; D055815:Young Adult
keywords: Pain; amyotrophic lateral sclerosis; assessment