Experiences With Assessments and Procurement of Their First Power Wheelchair Among Members of an Online Patient Community

Abstract

Date Presented 04/04/19

This survey of patient members of an online health community who use power wheelchairs suggests that OTs may better meet patient functional and social needs during power wheelchair assessment by discussing power wheelchair features that are available but may not be covered by insurance, as well as recommendations for avoiding complications. While most respondents felt their medical needs were assessed, few patients felt their social needs are being discussed in assessments.

Primary Author and Speaker: Sherry Xiao

Additional Authors and Speakers: Helene Svahn, Karin Leire, Angela Regier

Contributing Authors: Kristina Simacek, Paul Wicks, Elizabeth Lawler, Christopher Curran, Jamie Granskie

PURPOSE: The objectives of this study were to describe the experience of patients with amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), and spinal cord injury (SCI) obtaining their first power wheelchairs (PWC) and using their PWCs.

DESIGN: PatientsLikeMe members with ALS, MS, and SCI were invited to complete two cross-sectional surveys about their experiences. Inclusion criteria included: age of 18 or older, US residents, currently using a PWC, and for survey 1 only, receipt of first PWC in 2011 or after.

METHOD: Cross-sectional surveys with multiple choice and open-text questions about experiences obtaining their first power wheelchair and preferences for information about power wheelchairs.

RESULTS: A total of 174 eligible PWC users completed survey 1 (85 with ALS, 55 with MS, and 34 with SCI) and 121 completed survey 2 (48 with ALS, 42 with MS, and 31 with SCI). Participants were on average 57 years of age for both surveys, mostly male (61% survey 1, 55% survey 2), White (90% survey 1, 92% survey 2), and many held a college degree or higher (44% survey 1, 45% survey 2).

In survey 1, about half of patients reported having limited knowledge of what they wanted before getting their first PWC (54% with ALS, 42% with MS and 52% with SCI), and most reported they had unmet informational needs after receiving their first power wheelchair (71% with ALS, 83% with MS, and 89% with SCI). Most would be very or somewhat likely to access online resources for PWC information (87% with ALS, 84% with MS, and 90% with SCI).

The majority of ALS (78%) and SCI (81%), and some MS patients (40%) had an assessment with a physical therapist (PT) or occupational therapist (OT) to determine need for PWC features. The length of this first PWC assessment varied – 13% had an assessment lasting under 30 minutes, 50% between 30 minutes to 1 hour, and 29% with 1 hour or more. Most of assessments included discussion of medical needs (83%), but fewer included discussion on functional (68%) and social needs (45%), and 7% reported no discussion of medical, functional, or social needs during their first assessment at all.

Tilt (86%) and seat elevation (76%) functions were the most frequently recommended functions by therapists and/or vendors and suppliers, followed by recline function (74%), leg rests (69%), and standing function (18%). Nearly half (48%) reported they asked for features their insurance would not cover. Among 57 patients who requested features not covered by insurance, seat elevation was most frequently requested (56%), followed by recline/tilt function (21%).

Half (51%) of patients were not given the option to choose from more than one brand when purchasing their first PWC. The majority (78% ALS, 67% MS, and 87% SCI) would like to see all available features even if not covered by insurance so they can make an informed decision about whether to pay out of pocket for some features.

In Survey 2, 37% of patients reported they were not prescribed a plan to change positions, such as tilting or reclining the seat. Of those who had been recommended to change positions periodically, 25% did not know how frequently they should do so. About half (46%) reported they sometimes or never follow recommendations to change positions. Top reasons for not changing positions included forgetting (68%) and not wanting to interrupt their work (25%).

CONCLUSION: When obtaining the first PWC, most patients received an assessment with PT/OT, but discussion of functional and social needs was scarce. Patients would like to see features even if they are not covered by insurance. There is a need for further patient education support to help patients make informed, empowered decisions. The use of online resources may be beneficial.

References

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