Symptom Burden and Loss of Independence in Activities of Daily Living Among Patients With Amyotrophic Lateral Sclerosis

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Melissa Hagan PhD, MPH, Malgorzata Ciepielewska MS, Jack Wright MSc, Jennifer Mellor MSc, Joseph Husbands BSc, Lucy Earl MRes, Niall Hatchell MSc, James Pike MPhil
1. Mitsubishi Tanabe Pharma America, Jersey City, New Jersey, 2. Mitsubishi Tanabe Pharma America, Jersey City, New Jersey, 3. Adelphi Real World, Bollington, UK, 4. Adelphi Real World, Bollington, UK, 5. Adelphi Real World, Bollington, UK, 6. Adelphi Real World, Bollington, UK, 7. Adelphi Real World, Bollington, UK, 8. Adelphi Real World, Bollington, UK

Background: Amyotrophic lateral sclerosis (ALS) is a multisystemic neurodegenerative disease, clinically presenting with motor and non-motor symptoms. Patient symptomatology contributes to greater difficulties in performing activities of daily living (ADLs) and need for caregiver assistance as disease progresses.

Objective: Assess the impact of ALS symptoms on the ability to perform ADLs independent of a caregiver and describe the impact of low independence on other patient outcomes.

Approach: Data were drawn from the Adelphi ALS Disease Specific Programme™, a point-in-time survey of neurologists and their ALS patients in the USA. Data were collected from July–November 2020. Neurologists recorded patient demographics, symptoms, hospitalizations, ability to perform ADLs, emotional well-being, and number of patient-reported falls. Logistic regression was used to assess the association between number of ALS symptoms and the likelihood of ADL-dependence, defined as patients being “completely care-dependent” in ≥1 ADL. Odds ratios (OR) were calculated for the number of motor/bulbar, cognitive, behavioral, and respiratory symptoms. Comparisons of outcomes between ADL-dependence groups were made using Fisher’s exact and t-tests.

Results: Twenty-one neurologists reported data for 166 ALS patients of whom 54% were ADL-dependent for ≥1 ADL. A significant association was observed between the number of respiratory symptoms and likelihood of ADL-dependence (OR 3.41; 95% confidence interval 2.17–5.36; P<.001). ADL-dependent vs ADL-independent patients experienced a greater number of hospitalizations and falls in the last 12 months. Additionally, a larger proportion of ADL-dependent patients had poorer emotional well-being (all P<.001) and had expressed suicidal thoughts (P=.045) vs ADL-independent patients.

Conclusions: Our findings suggest that compared with other symptoms, respiratory symptoms had a greater impact on patients’ ability to independently perform ADLs, and ADL-dependent patients had more hospitalizations, falls, and poorer emotional health. Treatments that delay or minimize respiratory symptoms could allow ALS patients to be independent for longer.