A timeline for predicting durable medical equipment needs and interventions for amyotrophic lateral sclerosis patients

Abstract

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.

A proposed staging system for amyotrophic lateral sclerosis

“…While we recognize that, for example, time to gastrostomy is not the same as nutritional decline, it is a milestone reached after other nutritional interventions such as changes to dietary consistency and the use of fortified supplements have been tried and is therefore likely to occur at about the same disease stage. A study using a similar methodology of examining events as a function of proportion of disease elapsed, found that medical equipment needs also occur at predictable time points (Bromberg et al , 2010). …”

“…Milestone timings were standardized as proportions of time elapsed through the disease course using information from patients who had died by dividing time to a milestone by disease duration, a similar method to that used in a previous study of timings of medical interventions (Bromberg et al , 2010). Thus the time to each milestone was a value between 0 and 1, with 0 being symptom onset and 1 being death.…”

Predicting disease progression in amyotrophic lateral sclerosis

“…An awareness of disease course can help in the planning for resource allocations and anticipate timing for when the patient will require additional interventions . A lack of familiarity with ALS disease trajectory has recently been cited as an impediment to end‐of‐life discussions and a barrier to palliative care access, a situation that can result in added stress at a time of severe crisis .…”

Hilfsmittelversorgung bei der amyotrophen Lateralsklerose

“…Die Analyse der HMV wurde dabei auf 4 ausgewählte HM-Gruppen beschränkt: Orthesen (die Gesamtheit von Arm-, Bein-und Zervikalorthesen), therapeutische Bewegungsgeräte ("Bewegungstrainer" der unteren und oberen Extremitäten mit Elektroantrieb zur passiven Bewegung paretischer Extremitä-ten), HM der unterstützten Kommunikation (einschließlich "Tablet-Computern" sowie hand-, kopf-und augengesteuerten Kommunikationshilfen) und Elektrorollstühle (einschließlich Leichtgewicht-und Multifunktionsrollstühlen mit elektrischer Schiebehilfe). Die Auswahl der analysierten HM-Gruppen orientierte sich an ihrer Relevanz, Häufigkeit und Kostenintensität [7,8,9,10,11]. Orthesen und therapeutische Bewegungsgeräte werden mit einer supportiven Zielstellung zum Erhalt oder zur Stärkung motorischer Funktionen eingesetzt.…”