Theme 11 Multidisciplinary Care and Quality of Life

Abstract

Background: Wheelchair issues in ALS have rarely been studied (1). Customized wheelchairs are commonly prescribed for patients with ALS. In our clinic, 51% of patients who were seen for the first time during the year 2006 have used or are currently using customized wheelchairs. Wheelchairs maintain mobility once increased fall risk makes independent ambulation unsafe. They provide independence, comfort and pressure relief, allow increased participation in activities of daily living and reduce energy expenditure. Obtaining a customised wheelchair can take months and cost tens of thousands of dollars. Practice guidelines are not available to determine the optimal time to recommend a customized wheelchair. Our patients often wait an excessive amount of time, often past the point of need, for their customised wheelchairs. Some use the chairs for too short a time to justify the wait and cost.Objectives: To understand the use of time and resources in obtaining and using customized wheelchairs in our patient population and to generate research questions for future study.Method: Under a CUMC IRB approval, we reviewed the charts of patients with ALS who were evaluated for a customised wheelchair from April 2008ÁApril 2009. This time period was chosen to coincide with the initiation of performing wheelchair evaluations within our multidisciplinary clinic. Wheelchairs were recommended to those who had a history of falls, demonstrated gait deficits and could no longer walk safely.Results: A total of 38 patients' charts were reviewed. 52% of patients were male and mean age was 66 years old. The mean ALSFRS and FVC (% normal) were 35 and 81% at diagnosis and 32 and 66% at time of wheelchair recommendation. The mean number of months from diagnosis to recommendation of a wheelchair was 30. Patients waited a median of 4 months (range 2Á31 months). The average cost of each wheelchair was $25,648.97. Of the 38 patients, 24 fell and 13 were delayed in starting hospice while waiting for the delivery of their wheelchairs. Of the 38 patients, 8 have died. 4 of the 8 never received their wheelchairs prior to their death. The other 4 utilized their wheelchairs for a mean of 3 months prior to death (range 1Á5 months). Discussion and Conclusion:Streamlining and expediting the process of obtaining customized wheelchairs for ALS patients may allow maximum utilization of these devices improving the cost/benefit ratio. This may reduce falls and allow for quicker entry into hospice services. A prospective study investigating quality of life and medical economics is essential. Acknowledgements: MDA and Wings Over Wall StreetReference: Background: Rapid disease progression in ALS/MND patients leads to unique needs for power wheelchair selection and continuous requirements for power chair updates to meet functional changes. There are no evidence-based guidelines available for employment of durable medical equipment specifically in the ALS/MND population. Current management of mobility equipment for ALS/MND patients is primarily based on the exper...