Lisa I. Iezzoni, M.D., M.Sc.†, Sowmya R. Rao, Ph.D., R. Philip Kinkel, M.D.
†Although Dr Iezzoni has occasionally spoken and assisted in educational sessions sponsored by NMSS local chapters around the country, she has never accepted payment for any of these activities. This research was supported by the National Multiple Sclerosis Society (NMSS), Contract No. HC 0079. NMSS staff provided the database of their membership; however, the investigators conducted and designed the sampling scheme. NMSS staff also commented on early drafts of the questionnaire. The Center for Survey Research sent letters to potential survey participants on NMSS letterhead, and the invitation letter provided the NMSS New York office telephone number if recipients had any questions. However, we are unaware that any calls about the study were made to that number. Otherwise, the NMSS was not involved in the conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.
Difficulty walking is the most visible sign of disability among persons with multiple sclerosis (MS). However, little is known about mobility aid use by persons with MS living in the community.
To explore perceptions of mobility problems related to MS and patterns of mobility aid use by persons with MS residing in communities across the United States.
We conducted a 30-minute telephone survey in mid-2007 with 703 community-dwelling, working-age adults who self-reported having MS. We identified potential survey respondents using membership lists of the National Multiple Sclerosis Society, oversampling individuals living in zip codes with relatively high poverty rates. All analyses, including calculation of simple percentages, used sampling weights to produce population estimates. The overall response rate was 73.4%. Survey questions asked basic information about all mobility aids used by respondents and details about up to two different aids. We used multivariable polychotomous logistic regression to predict use of various mobility aids accounting for demographic and disease characteristics.
In questions about the previous 2 weeks, needing to concentrate on walking because of MS was the most common problem cited (weighted percent = 79.3%), followed by MS making standing more difficult (69.9%), increased effort needed to walk (59.0%), and needing to hold onto furniture, walls, or someone’s arm when walking indoors every day (40.0%). Among the 703 respondents, 434 (weighted percent = 60.5%) reported using at least one mobility aid; the majority of these individuals reported using more than one type of aid. Manual wheelchairs were the most common mobility aid (63.4%), followed by canes (56.7%), power wheelchairs (36.7%), and scooters (32.2%). Among those using three or more different types of mobility aids, the large majority used manual wheelchairs (88.2%), followed by canes (65.4%). Persons who are married or living with partners were much less likely to use powered equipment than those who were never married (adjusted odds ratio [AOR] = 0.32; 95% CI: 0.13–0.82). Women were much less likely than men to use powered equipment (AOR = 0.40; 95% CI: 0.21–0.75).
The vast majority of persons with MS who use at least one mobility aid own more than one type and about half own three or more different types of mobility aids. Persons with MS appear to “mix and match” different devices to suit their specific mobility needs. Given restrictive health insurance coverage policies for mobility aids, these findings raise questions about how persons acquire and pay for higher-technology mobility aids.