Power wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelines.

OBJECTIVES

To determine the features most frequently selected in a power wheelchair (PWC), level of satisfaction with the selections, and how often the PWC features are used by patients diagnosed with amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND).

DESIGN

Internally generated questionnaire.

SETTING

An ALS/Muscular Dystrophy Association center.

PARTICIPANTS

Convenience sample of current patients (N=45) of our clinic with ALS/MND who are PWC users (men, n=27; women, n=18; age range, 27-85 y).

INTERVENTION

Self-administered survey.

MAIN OUTCOME MEASURE

Thirty-two patients completed a 31-question survey investigating patients' patterns of selection, satisfaction, and frequency of PWC use; technical and psychometric influences; and other aspects of decision-making processes that patients experience before, during, and after acquiring a PWC.

RESULTS

Ninety percent of respondents received their evaluations at a multidisciplinary ALS clinic, 1 via the Department of Veterans Affairs, and 1 was unknown. Sixty-six percent of patients thought the chair evaluation was timed correctly, and 19% wished they had started sooner. Forty-five percent of people were able to walk a few steps, and 55% were able to stand when their chairs arrived. When they first received the chair, 79% were satisfied with the overall comfort of the chair, and 86% were satisfied with the ease of use; currently, 69% are satisfied with the overall comfort, and 72% are satisfied with ease of use. There was a statistically significant difference in how patients used their wheelchair features initially and currently in terms of seat elevate and attendant control, but not tilt, recline, and elevating leg rests. The average cost for the power chairs was $26,404 (range, $19,376-$34,311), and the average cost a month is $917. Overall, 88% of respondents said they would get the same type of chair with the same features again, and 81% felt that the chair was a good value for the cost.

CONCLUSIONS

We obtained first-hand knowledge from 32 patients with ALS/MND who are current PWC users on their use and satisfaction with their PWCs from initial to current use. Based on this survey, patients with ALS/MND seen for their wheelchair evaluation with experienced clinicians exhibit high use and satisfaction with their PWCs.