A timeline for predicting durable medical equipment needs and interventions for amyotrophic lateral sclerosis patients.
ALS is progressive with increasing patient needs for durable medical equipment (DME) and interventions (gastric feeding tube - PEG, and non-invasive ventilation - NIV). We performed a chart review of deceased patients to determine the time-course of needs and their estimated costs. A timeline of needs was based on when clinic personnel felt an item was necessary. The point in time when an item or intervention was needed was expressed as a percentage of a patient's total disease duration. A wide range of DME and interventions was needed irrespective of site of ALS symptom onset (bulbar, upper, lower extremity), beginning at 10% of disease duration of lower extremity onset and increasing thereafter for all sites. The cumulative probability of costs of items and interventions began at 25%-50% of disease duration and increased to between $18,000 and $32,000 (USD), highest for lower extremity onset due to the cost of wheelchairs. We conclude that a high percentage of ALS patients will need a full spectrum of major DME items and interventions during the second half of disease duration. This results in a linear rise in costs over the second half of the disease duration.
Bromberg
Mark B
MB
Department of Neurology, University of Utah, Salt Lake City, USA. mbromberg@hsc.utah.edu <mbromberg@hsc.utah.edu>
Brownell
Alexander A
AA
Forshew
Dallas A
DA
Swenson
Michael
M
D000553:Ambulatory Care / Q000191:economics / Q000706:statistics & numerical data; D000690:Amyotrophic Lateral Sclerosis / Q000191:economics / Q000401:mortality* / Q000628:therapy*; D018450:Disease Progression; D004389:Durable Medical Equipment / Q000191:economics / Q000706:statistics & numerical data*; D004750:Enteral Nutrition / Q000191:economics / Q000706:statistics & numerical data; D005260:Female; D017048:Health Care Costs; D006801:Humans; D053208:Kaplan-Meier Estimate; D008297:Male; D008499:Medical Records; D008875:Middle Aged; D020380:Needs Assessment / Q000191:economics / Q000706:statistics & numerical data*; D011175:Positive-Pressure Respiration / Q000191:economics / Q000706:statistics & numerical data; D011237:Predictive Value of Tests; D013997:Time Factors; D014589:Utah / Q000453:epidemiology; D014910:Wheelchairs / Q000191:economics / Q000706:statistics & numerical data