INTRODUCTION

Quality of life (QoL) in persons with multiple sclerosis (MS) has increasingly been a topic of interest within the last decade. Evidence of significantly decreased self-reported QoL in this population, when compared to both the general population and to other chronically disabling conditions, has highlighted a large need for intervention (1). Fatigue has been identified as being among the primary culprits leading to a decreased participation in everyday and social activities (2). In fact, individuals with MS emphasized vitality and general health as being the most important contributors to overall life satisfaction (3).

One of the primary justifications for mobility device prescription for people with MS is to decrease overall fatigue and thereby allow for an increased participation in daily activities. Yet, often in cases of persons with MS, assistive device prescription may be delayed. Both people with MS and clinicians in general often have a bias against increased reliance on assistive technology (AT). Often, they view it as an indication of increased disability and decreased independence. Due to this mindset, individuals commonly opt for the least amount of perceived intervention. This may come at a price. While attempting to maintain autonomy and independence, they may actually be hurting themselves by having less endurance for participation in daily activities. The purpose of this study is to provide evidence of the enabling effect of appropriate mobility interventions as it relates to social participation in people with MS.

RESEARCH QUESTIONS

How often do people with MS, who use a mobility device, participate in social activities?

Does the frequency of social participation in people with MS change over time?

Does the type of mobility device used relate to the level of social activity?

MATERIALS AND METHODS

Subjects: 19 people with multiple sclerosis (MS), 8 females and 11 males, were interviewed via a quarterly telephone questionnaire. The average age of the subjects was 48.3 ± 6.0 years. Inclusion criteria included MS as diagnosed by a medical doctor, age between 18 and 65 years, and the use of a manual wheelchair. All subjects provided written informed consent prior to data collection. Questionnaire: Subjects were asked questions regarding the frequency of social participation. Social participation was defined as social activities included going to a party, going to the movies or theater, attending a religious or community event, attending a sporting event, and 3 questions targeted examining the frequency of socialization with friends, family, and associates in different settings. The final question was devoted to "other" social activities. Subjects were asked if they had participated in any of the aforementioned activities in the previous week, and, if so, what was the frequency. Statistical Analysis: Data were collected at baseline, after 1 month, and every three months afterwards, for approximately one year. Data were converted into 6 time frames for data analysis (Table 1):

Group differences over time were determined using a repeated measures ANOVA with a level of significance at p< .05. No significant difference will indicate that social participation does not change over time. Secondary Analysis: Subjects were divided up into four functional levels based on type of mobility device available to them: 1) ambulation aid and manual wheelchair (A/M), 2) ambulation aid, manual wheelchair, and power wheelchair (A/M/P), 3) manual wheelchair (M), and 4) manual wheelchair/ power wheelchair (M/P). To further simplify analysis, social participation was divided into four levels based on quartiles from frequency: 1) no activity (0-2x) 2) minimal activity (2.1-3.5x) 3) moderate activity (3.6-7.8) 4) high level of social activity (>7.9). A χ2 analysis with a Fisher's exact was calculated to determine the relationship between level of function and level of activity.

RESULTS

Figure 1: Mean Frequency of Participation by Time Frame

For each subject, the sum of all social activities was calculated at windows 1-6. The mean frequency for all subjects is depicted graphically in Figure 1. Overall, social participation remained unchanged statistically over the one-year time interval, and averaged between 4.65 and 7.25 times/ week. For further analysis, average participation across the time frames was calculated. Subjects were then divided into functional level groups based on the type of mobility device available to them: A/M, A/M/P, M, and M/P.

Figure 2: Frequency of Participation

Figure 2 gives a graphical depiction of the difference in frequency of social participation between the four groups. The M/P group had nearly twice the frequency of social participation when compared to the other three groups. 2 analysis demonstrated a very strong relationship between level of function and activity level (p<.001). Eighty-eight percent of the people of the M/P were moderately to highly active when compared to the other three functional levels, and they participated in social activities around twice as many times per week. On the other hand, a majority (75%) of the people relying solely on a manual wheelchair for functional mobility had minimal social activity, or none at all.

DISCUSSION

Fifty percent of individuals with MS will require some type of mobility assistance as their disease progresses (4). This is particularly significant considering Aronson has shown that there is an association between mobility and quality of life in persons with MS (5). A decline in mobility may potentially lead to a decline in sociability, participation, and, consequently, life satisfaction. Though this study is limited by a small sample size, it is able to provide valuable information regarding the effect of mobility device on social participation. A 2 analysis has shown that there is a statistically strong relationship between activity level and functional level. Yet, the actual direction of the relationship is not necessarily in the direction that would seem intuitive, that is, the higher the function level, the higher the level of social participation. Our results, however, have shown that individuals who are non-ambulatory and have a manual and power wheelchair available to them have the highest activity level of all functional groups investigated. These findings testify to the impact AT can have on participation in daily activities. The ultimate goal of AT prescription should be to re-engage the user in activities they value. These findings have confirmed our hypothesis that, in persons with MS, an increased use of AT results in an increased ability to participate in social activities. Therefore, despite the fact that a majority of the people who are non-ambulatory and use a power wheelchair are more likely to be advanced in their disease process, they are actually less disabled because of the AT intervention. It is likely that in this group, the power wheelchair allows them to minimize the effort needed to ambulate or propel a manual wheelchair, resulting in an increased energy supply for other activities. It is our hope that these findings will serve as an impetus for further research regarding the effect of mobility device selection on activity level and quality of life in persons with MS.

REFERENCES