Abstract
Background: Multiple sclerosis (MS) is a chronic neurologic disease associated with gait impairment that adversely affects quality of life (QOL). Data are lacking on the impact of these impairments from the perspectives of people with MS and care partners of a person with MS, defined as individuals caring for a friend or family member with MS.
Methods: In January and February 2008, online surveys were conducted by Harris Interactive® (HI) on behalf of Acorda Therapeutics, Inc. and the National MS Society (USA) to explore the impact of difficulty walking (defined as trouble walking at least twice a week and/or an inability to walk at least twice a week due to MS) from the perspectives of people with MS and care partners of a person with MS. The study population was drawn from pre-existing panels, generated by HI and eRewards market research, of self-reported people with MS, care partners of a person with MS, or adults living in the same household as a person with MS. Panel members were invited to participate by e-mail, and their status/eligibility was verified with screening questions. Survey results were weighted for demographic factors and propensity to be online. Percentages were adjusted to account for acceptance of multiple responses and exclusion of non-responses.
Results: The respondents included 1011 people with MS and 317 care partners. Demographic and MS disease characteristics in the people with MS sample were similar to those of people with MS in the general population. Among people with MS, 41% reported having difficulty walking, including 13% with inability to walk at least twice a week. Of those with difficulty walking, 70% said it was the most challenging aspect of having MS. Of those with inability to walk at least twice a week, 74% said it disrupted their daily lives. Only 34% of people with MS with difficulty walking were employed. Communication between people with MS and physicians regarding difficulty walking was suboptimal; 39% of all people with MS said they never or rarely discussed it with their doctor. Significant percentages of all care partners experienced reduced QOL and socioeconomic status in association with caring for a person with MS.
Conclusions: Difficulty walking is a common impairment in people with MS, with adverse effects on the QOL of people with MS and care partners of a person with MS.
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Background
Multiple sclerosis (MS) is a chronic and generally progressive neurologic disease with an estimated prevalence in the US of approximately 400 000.[1,2] Onset of MS most often occurs in adults between the ages of 20 and 50 years, and is two to three times more common in women than men.[2,3] The course of MS is heterogeneous, but generally evolves over 30–40 years, and is characterized by multiple neurologic deficits and significantly decreased quality of life (QOL), and leads to substantial disability in many patients.[1,3–5] In a population-based study, 33% of 1099 people with MS had difficulty walking and required assistance at 10 years from onset of MS.[5] Symptoms are also heterogeneous and may include optic neuritis, fatigue, weakness, gait ataxia, spasticity, muscle spasms, pain, tremor, numbness, paraesthesia, bladder and bowel dysfunction, and cognitive deficits, among other problems.[1]
Gait impairment is a clinical hallmark of MS, often resulting from the combination of multiple common symptoms and deficits such as fatigue, weakness, spasticity, ataxia, and balance problems.[6,7] Epidemiologic studies have indicated that about 50% of people with MS require at least some assistance with walking, such as a single-pronged cane, within 15 years of disease onset,[5,8] although more recent data suggest that progression to this stage may take longer, at least in some patients.[9] Accordingly, measurement of walking ability is a major component of instruments widely used for assessment of disease severity and progression, such as the Kurtzke Expanded Disability Status Scale (EDSS) and the MS Functional Composite (MSFC).[10–12] Although the EDSS has been criticized for over-reliance on ambulation and lack of sensitivity to other problems, such as cognitive dysfunction, it remains one of the most widely used disability measures in MS relative to the Scripps Neurological Rating Scale,MS Impairment Scale, and the MSFC.[12]
Walking, gait, and mobility have been given standard definitions by different oversight groups. The WHO/International Classification of Disability, Functioning, and Health defines walking as “moving along a surface on foot, step by step, so that one foot is always on the ground, such as when strolling, sauntering, walking forwards, backwards, or sideways.”[13] Gait pattern functions are defined as “movement patterns associated with walking, running or other whole body movements,” and gait impairments may include “spastic gait, hemiplegic gait, paraplegic gait, asymmetric gait, limping, and stiff gait patterns.”[13] Mobility is more broadly defined as “moving by changing body position or location or by transferring from one place to another, by carrying, moving or manipulating objects, by walking, running or climbing, and by using various forms of transportation.”[13]
Studies have shown that impaired walking ability and mobility have a significant impact on health-related QOL (HR-QOL) and QOL. A survey of people with MS found that 90% of respondents reported problems with mobility, more than any other of the five dimensions of the EuroQOL 5-Dimension (EQ-5D), which also includes self-care, usual activities, pain, and anxiety/depression.[14] Similarly, a population-based survey evaluating scores on the Health Utilities Index Mark 3, an eight-item HR-QOL instrument, in respondents with MS (n = 302) and without MS (n = 109 741), found that the largest difference between the two groups was in ambulation.[15] In another survey, when asked to rank 13 bodily functions in order of importance, people with MS (n = 166) gave the highest priority to lower leg function, independently of whether or not their gait was impaired.[16] Mobility was also mentioned by the greatest numbers of US physicians (65%) when they were asked in a survey to name factors affecting QOL in MS patients.[17]
Gait impairment is also a major factor in the socioeconomic burden and status of people with MS. Although data on the economic costs of MS are limited, a 2004 analysis of medical claims in 10 099 people with MS found that ‘abnormality of gait’ was associated with the highest annual costs of numerous diagnoses, including stroke and Alzheimer’s disease.[18] Recent data from the North American Research Committee on Multiple Sclerosis (NARCOMS) database show that even mild impairment in gait and mobility may have a significant impact on the ability to perform instrumental activities of daily living, and on socioeconomic status and employment.[19,20]
Despite the high prevalence, burdens, and costs of mobility impairment in MS, there is scant research on its effects from the patient perspective.[21] In addition, the effects of gait impairment and mobility loss have been little studied from the perspective of care partners, defined as individuals caring for a friend or family member with MS.
The key objectives of the current study were to examine the impact of walking difficulty on the lives of people with MS and care partners in regard to physical abilities, emotional health, and financial status; perspectives on use of mobility devices; the role of exercise in patients with MS; and the perspectives of care partners toward their responsibilities.
Methods
Survey Source and Samples
The two surveys that contributed to this study of people with MS and care partners of a person with MS were conducted online by Harris Interactive® (HI), an international public opinion research firm.[22] HI was commissioned to conduct this survey for Acorda Therapeutics and the National MS Society (USA). The samples for these surveys were drawn from a pre-existing Harris Poll Online Panel (HPOL), which consists of several million members globally who consented to be contacted for public opinion surveys administered through the Internet. These samples were supplemented with a similar panel from e-Rewards, Inc. All respondents were adults aged ≥18 years living in the US who had self-reported that they had been diagnosed with MS, or were somewhat or very involved with the care of a family member or friend with MS. Because the people with MS and the care partner samples were independently drawn, the two groups were not related or known to each other. For this reason, comparisons of the perspectives of the two groups need to be interpreted with a certain degree of caution.
The surveys were conducted via an online survey instrument hosted by HI servers from 28 January 2008 to 25 February 2008. Individual e-mails were sent to respondents who initially met entry criteria. Each e-mail invitation included a URL link to the survey website, with a password to protect respondent anonymity and ensure that each respondent could take the survey only once. Upon entering the survey, screening questions confirmed the status of people with MS (e.g. “Have you been diagnosed by a healthcare provider with MS?”) and care partners (e.g. “How involved are you in caring for the friend or family member living with multiple sclerosis?” [only those who said they were somewhat or very involved were considered eligible for the study]). Once determined eligible, respondents entered their answers online to each survey question presented on screen. The surveys were 15 minutes in length for people with MS, and 12 minutes in length for care partners. Similar questions were asked of people with MS and care partners for comparison of their responses and perspectives.
Key Definitions
It was necessary to establish an operational definition of ‘difficulty walking’ for the purposes of this study because this problem in people with MS covers a wide spectrum, from very mild to extremely severe. ‘Difficulty walking’ was defined for the purposes of this study as trouble walking at least twice a week and/or an inability to walk at least twice a week due to MS. This definition was used because it captured a segment of this wide spectrum that was likely to ensure reasonable sensitivity for analysis of impacts. Although it could be argued that this definition is arbitrary, and that other possible definitions could have been used, which perhaps included more mild impairments, the author believes the definition used in this study has provided a good balance between either excessively broad or narrow limits.
‘Care partner’ was defined as a person who is currently somewhat or very involved with caring for a family member or friend with MS. Since the samples for the two surveys were drawn independently, the care partners were not necessarily a care partner of a person with MS who participated in the survey.
Statistical Analysis
Survey results were weighted as needed for age, sex, race/ethnicity, education, region, and household income. Propensity score weighting was conducted to correct for potential selection bias of the respondent population. The variables for propensity score weighting are based on the findings of HI research that compared online respondents from the HPOL with respondents contacted by telephone with random digit dialing to identify attitudinal and behavioral variables that predict propensity to be online. This allowed for weighting of responses to adjust for observed behavioral/attitudinal differences between participants in this study and the general population. Percentages included multiple response answers to account for ‘not sure’ and ‘decline to answer’ responses.
Results
Demographic Characteristics of Respondents
The people with MS cohort of the study included 1011 responders who met the eligibility requirements. Excluded were 190 responders who did not meet the study criteria, 62 responders who did not complete the study, and nine responders who met the criteria but were in excess of the study quota. The care partner cohort included 317 responders. Excluded were 2392 responders who did not meet the study criteria, 73 responders who did not complete the study, and seven responders who met the criteria but were in excess of the study quota.
Demographic data from the survey respondents are shown in table I. Among the people with MS, women outnumbered men by almost 3 to 1 (table I), in keeping with the estimated worldwide sex distribution of people with MS.[2]Most of the people with MS (60%) were aged between 35 and 54 years, with a mean of 46.2 years, and were roughly evenly distributed geographically among the four regions (East, Midwest, South, and West) of the US. Most were married (59%), and the vast majority were White (80%). Approximately one-third had a 4-year college degree or higher, and income was roughly evenly distributed between the lower, middle, and upper ranges (table I).
The care partner group included equal proportions of men and women, and age distribution was generally similar to that of the people with MS (table I). Although the proportion of survey respondents aged ≥65 years was higher in the care partner group (14%) than in the people with MS group (4%), the mean age was almost the same in both groups (46.6 years for care partners vs 46.2 years for people with MS). Race and ethnicity distribution was very similar in the two groups. There appeared to be a higher percentage of individuals with a 4-year college degree or higher in the care partner group (43%) than in the people with MS group (32%); income distribution appeared similar in the two groups (table I).
General Experience of MS
Among all people with MS, 695 (69%) said they were currently diagnosed with relapsing-remitting MS, 176 (17%) reported a current diagnosis of secondary-progressive MS, including 113 (11%) with flare-ups and 63 (6%) without flare ups, and 58 (6%) reported having primary-progressive MS. Another 27 (3%) people with MS said they had been diagnosed with progressive-relapsing MS; of the remaining 53 (6%) people with MS, 4% replied ‘other’ and 2% selected ‘not sure’ for their type of MS.
Among the people with MS, the most commonly reported MS symptoms experienced at least twice a week were fatigue (76%), abnormal sensations (60%), and losing balance (54%) [figure 1]. Most people with MS said that, in the past 6 months, their MS had at least some negative impact on their ability to perform activities of daily living, including household chores (70%), shopping (61%), and participating in sports, physical activities, or exercise (60%). In addition, negative impacts, within the past 6 months, were noted on travel (45%), personal care (e.g. bathing, dressing, and grooming, etc.) [41%], work (39%), and caring for children and family (35%). Most people with MS reported at least some adverse impact on one or more everyday activity in the past 6 months, including difficulties maintaining balance (76%), running (75%), walking long distances (74%), climbing up and down stairs (68%), sleeping (62%), and standing (56%).
Prevalence and Impact of Walking Difficulty
Frequency of Difficulty Walking
Difficulty walking was defined as trouble walking at least twice a week and/or an inability to walk at least twice a week due to MS. Of all people with MS, 412 (41%) reported difficulty walking, including 135 (13%) who were unable to walk, and 351 (35%) who had trouble walking but not inability to walk, at least twice a week. In addition, more than half (56%) of those with trouble walking, but not inability to walk, experienced this problem at least six times a week, and 75% of those with inability to walk experienced this problem at least six times a week. Almost one-third (n = 326; 32%) of people with MS reported using at least one mobility device, including 193 (19%) who used a cane, 119 (12%) who used a wheelchair, 85 (8%) who used a walker, and 45 (4%) who used another kind of mobility device (some patients used more than one device). In addition, 177 (18%) people with MS reported having trouble getting out of a chair, and 168 (17%) reported having to hold on to furniture or walls when crossing a room. Importantly, 391 (39%) of all people with MS (regardless of how often they experienced problems walking) said they rarely or never spoke with their doctors about walking difficulties related to MS.
Impact of Difficulty Walking
Of the 412 people with MS who reported difficulty walking, 289 (70%) either strongly (32%) or somewhat (38%) agreed that it was the most challenging aspect of their MS, and 282 (68%) either strongly (24%) or somewhat (44%) agreed that it “makes it more difficult to manage my MS.” In addition, 101 (75%) of the 135 people with MS who experienced inability to walk at least twice a week found this problem to be either very disruptive (63%) or disruptive (11%) to their daily lives, and 222 (63%) of the 351 people with MS who had trouble walking (excluding inability to walk) at least twice a week, found this problem to be very disruptive (28%) or disruptive (35%) [figure 2].
In general, most people with MS with difficulty walking said this problem not only negatively affected their mobility, but also significantly restricted their activities and affected their emotional health (figure 3). More specifically, the vast majority of people with MS with difficulty walking said this problem adversely affected their ability to perform daily tasks (91%), their self-esteem (84%), their work life (83%), and their ability to travel (87%). More than half (58%) reported having to miss a special event in their lives, such as a wedding, birthday party, graduation, or other major personal event, due to difficulty walking. Most people with MS with difficulty walking also said this problem adversely affected their social life, including the ability to socialize outside the home (82%), their intimate relationship with a spouse or dating partner (73%), or relationships with friends (67%) and family (65%). In addition, 344 (83%) of people with MS with difficulty walking said they required assistance from a family member, friend, or employee to fulfill their household responsibilities, compared with 622 (62%) of people with MS overall who reported needing such assistance. About twice as great a percentage of people with MS with difficulty walking required help with personal care (37%) compared with all people with MS (18%).
Difficulty walking also appeared to have a substantial impact on socioeconomic status. Among people with MS with difficulty walking, 207 (50%) said that this impairment increased their daily expenses, by either a lot (18%) or a little (32%).
In addition, 79% of those with difficulty walking said that MS had interfered with their ability to work such that they experienced a loss of income, compared with 54% of all people with MS. With regard to employment, only 34% of people with MS with difficulty walking were working, compared with 49% of all people with MS. Among the 131 people with MS with difficulty walking who were employed, 103 (79%) said this specific impairment had a negative impact on their work, causing a range of related problems (figure 4).
Use of Mobility Devices
Of the 326 (32%) people with MS who reported using at least one mobility device such as a cane, walker, or wheelchair, 279 (86%) said they used it to maintain some measure of independence or to keep working. The vast majority (n = 299; 92%) of people with MS who used a mobility device said it was worth it to be able to live their life. However, 48% of people with MS who did not use a mobility device said they would be embarrassed to use one, and 37% of those who used a device said they find using it embarrassing. More than one-third (36%) of those who used a mobility device said they did not use it as much as they should.
Exercise Practices and Perspectives
Although 18% of people with MS stopped exercising after they received a diagnosis of MS, 751 (74%) of all people with MS and 261 (63%) of people with MS with difficulty walking reported that they currently engaged in sports or exercise, and 457 (45%) of all people with MS and 140 (34%) of the people with MS with difficulty walking exercised at least once a week. Among all exercisers, 70% of all people with MS and 57% of people with MS with difficulty walking said they had initiated their exercise regimen on their own; the remainder in each group had begun exercise on their physician’s recommendation. The vast majority of all people with MS and people with MS with difficulty walking who exercised thought the practice had at least some positive impact on their QOL (85% of both groups).
Experience of Care Partners
Among the 317 care partners, 280 (88%) were family members or partners of a person with MS; the remaining 37 care partners (12%) were friends of a person with MS (figure 5). In general, the responses of care partners and people with MS were similar with regard to the frequency and impact of MS symptoms and difficulty walking. Indeed, 186 (59%) care partners shared the same opinion as their friend or relative with MS about the impact of difficulty walking.
Regarding employment, 68% (n = 215) of care partners were employed, among whom 47% were employed full time, 13% part time, and 11% were self-employed. Importantly, 84 (27%) care partners reported that caring for a person with MS adversely affected their work life, resulting in reduced personal income, and 46% of working care partners reported other adverse effects on employment, including the need to take days off (32%), work a reduced schedule (15%), ask their employer for workplace accommodations (16%), or stop working entirely for a time (10%).
Among the 203 (75%) care partners assisting a person with MS with difficulty walking, 98 (48%) said difficulty walking was one of the most challenging aspects of managing MS and 115 (57%) said they felt depressed about this impairment. In addition, 81 (40%) of these care partners said they felt burdened by their family member’s or friend’s walking difficulty, 80 (39%) said more help was needed to manage it, and 69 (34%) said the walking difficulties had a negative impact on their QOL. However, the vast majority of all care partners (n = 289; 91%) said they were coping well with their caregiving responsibilities.
Discussion
This study provides much-needed data on the impact of difficulty walking on QOL from the perspectives of people with MS and care partners of a person with MS. Previous analyses of gait, walking, and mobility impairments in MS have focused on specific symptoms that contribute to this problem, the clinical characteristics of MS-associated gait abnormalities, and approaches to evaluation and management.[6,7,23–27] Finlayson and van Denend[21] conducted in-depth interviews with 27 older patients with MS (mean age 62 years, range 55–82 years) to elicit their perspectives on their experience of mobility loss, using a qualitative, ‘phenomenological’ approach. The sample was small, confined to older patients, included 85% women, and lacked the perspectives of care partners. Similarly, few survey studies specifically examined the impact of walking impairment on stroke patients or their care partners. One study assessed the importance of community ambulation among 130 stroke survivors, 74.6% of whom considered it to be either essential or very important.[28] Several studies showed that the functional status, including walking ability, of stroke patients affects their caregivers’ burden, including QOL and employment.[29–31] Hence, the quantitative data from a large and generally representative sample of people with MS and care partners provided by the present study is, to a large extent, unprecedented in the literature.
The characteristics of this survey sample were generally similar to those of other MS samples reported in the literature, including the 3 : 1 ratio of women to men, and the percentages of patients diagnosed with relapsing-remitting, secondary-progressive, and primary-progressive MS.[5,32] The proportion of 41% of people with MS with difficulty walking, as defined in the present study, is also consistent with previous studies. The prevalence of walking impairment in population-based studies of people with MS has generally ranged from 40% to 50% and correlates with disease duration, although many people with MS have some impairment early in the disease.[5,33,34] However, some surveys have found a higher prevalence. For example, 67% of 2109 people with MS surveyed in the US reported having ‘difficulty walking’ as a symptom.[3] In addition, a British postal survey in 1992 found that 91% of people with MS reported loss of mobility.[14] These differences are likely due to two factors. First, surveys that have examined walking difficulty have used a variety of sources for their samples, which can introduce bias in terms of the range of disability among respondents. Second, different studies have defined walking impairment in a variety of ways, in some cases setting the bar very low.
The findings reported here showed that difficulty walking has a broad and substantial impact on daily activities, social function, employment, and socioeconomic status. The impact of mobility loss and difficulty walking on employment has been previously documented. For example, a Canadian study in 602 people with MS found that 66% were unemployed; the main contributing factors cited for unemployment were ambulation difficulties (41%), fatigue (39%), and memory or visual problems (12%). Mobility problems were also significantly correlated with employment (F(1557) = 52.5; p < 0.001) in a multivariate analysis.[35] An analysis of the NARCOMS database of 8867 people with MS found that 56% were unemployed and that unemployment correlated significantly with four functional domains, including mobility problems, hand function, fatigue, and cognitive problems.[36]
In the present study, 51% of people with MS overall were not engaged in paid employment, including 66% of those with difficulty walking. Moreover, the specific ways in which difficulty walking adversely affected employment were identified, including the need to take days off (44%), work reduced hours (34%), and request workplace accommodations (33%) [figure 4]. These findings are thus consistent with and amplify the findings of previous studies on the prevalence of unemployment in MS patients and the contribution of walking impairment to this problem.
To our knowledge, this study is the first to report data in a large sample of people with MS on the effects of difficulty walking on specific social activities. More than half of people with MS reported missing significant social events such as a vacation, wedding, birthday party, or graduation. These adverse effects on social life may help explain the significantly lower (worse) social function scores for people with MS, compared with the general population, previously observed in multiple studies of QOL using assessment instruments such as the short form-36 (SF-36), and the Multiple Sclerosis Quality-of-Life-54 (MSQOL-54).[37–40] In addition, social functioning scores in previous studies were highly correlated with EDSS scores, which strongly reflect ambulatory status,[40] and were more strongly associated with ambulatory status than 9 of 14 other domains of QOL included in the MSQOL-54.[37]
Close to a third of all people with MS in this study used mobility devices such as a cane, walker, or wheelchair, but they had mixed feelings about using such support. Almost half of those people with MS who did not use one said they would be embarrassed to do so, and 37% of those who did use a device said they were embarrassed by it. Research in this area is sparse, but several previous population studies have reported somewhat higher percentages (40–45%) of people with MS who were using assistive devices.[21,41] Previous studies also concurred with the present finding that use of mobility devices may cause embarrassment, and investigators further suggest their use may be seen as an admission of defeat or of giving up, being lazy, or “not trying.”[21,42] These studies have also reported that these feelings can be overcome with adaptation, consistent with the present finding that 92% of mobility-device users thought the devices were worthwhile.
This study also provides data on exercise in people with MS, which has drawn increasing interest as a therapeutic option. Recent studies have shown that exercise is beneficial for people with MS in both functional and QOL domains.[43–45] Difficulty walking has been significantly correlated with reduced levels of physical activity, which may adversely impact QOL and MS symptoms, as well as general health.[44,46] The present study found that 74% of people with MS were exercising, including 63% of the people with MS with difficulty walking, and that 85% of those who exercised thought it was beneficial to their QOL. Although other data on the use of exercise from the perspective of people with MS are sparse, one recent study[47] in 93 people with MS found that 42 (45%) of the exercising patients were engaging in at least two 30-minute exercise sessions per week. These people with MS ranked improved physical performance and sense of personal accomplishment as the greatest benefits of exercise. Notably, the percentage (45%) of people with MS who were exercising at least once a week was the same (45%) as that in the present study.
It is important to note this study’s finding that 39% of all people with MS said they rarely or never spoke with their doctors about their walking difficulties. The current state of management of MS-related walking difficulty among MS healthcare providers has not been studied and little is known at present about its quality. However, some investigators in this area have suggested that it may be suboptimal.[23,42] One study found that, among 408 outpatients with a range of chronic diseases, their 118 physicians underestimated or failed to note over 60% of cases of patients who had difficulty walking more than a few blocks, including those who had problems walking even one block or climbing one flight of stairs.[42,48] Although quantitative analyses of the treatment of mobility problems of MS patients are lacking, investigators in this field have suggested that both patients and physicians are deterred from addressing this problem because they feel it cannot be effectively treated.[23,42] Clearly, more research is needed on management of walking difficulty in MS. It is hoped that this study will help to clarify factors in this area that were previously ill defined, and perhaps contribute to improved care for this issue.
Finally, this study also helps to characterize the specific impact of difficulty walking in people with MS on care partners. Reviews of previous studies have established that caregiving for a person with MS is associated with reduced QOL relative to the general population, and adversely affects psychological well-being, social life, and socioeconomic status.[49,50] In the present study, 27% of care partners reported loss of personal income and 46% of working care partners reported adverse effects on their working life associated with their care for a person with MS. Few other studies have analyzed the contributions of specific MS symptoms and impairments to caregiver burden. However, one study in 51 care partners of people with MS found that memory loss was significantly associated with care partner strain.[51] Another study of 55 spousal care partners found that the behavior and/or problem associated with MS that caused the most distress to care partners was difficulty walking, followed by sudden mood changes, muscle paralysis or weakness, incontinence, and upsetting other people.[52] In the present study, 57% of care partners of a person with difficulty walking felt depressed about their friend’s or family member’s walking difficulties, 40% said they felt burdened by it, and 34% said it had a negative impact on their QOL.
Limitations
Great care was taken in the recruitment of the samples for the present study and in making statistical adjustments to correct for potential sampling bias. However, because there is no population-based national registry of people with MS, the present study had to rely on other national cohorts for sampling purposes. Although the resulting sample of people with MS compared well with other national samples, there is always the possibility that some sampling bias may have existed, especially with regard to patients who responded to the survey relative to those who did not respond.
Since the two samples used in the present study were independently drawn, the individuals in the two samples were not necessarily related to one another. It may be that, had it been possible to recruit care partners of the people with MS in the study, the results would have looked different; i.e. that the hypothetical sample of matched care partners of the people with MS would have had responses that differed from those of the actual sample studied. Thus, comparisons of the perspectives of these two groups need to keep in mind that, although these samples shared the experience of MS, they were not necessarily related to each other.
Our use of ad hoc definitions could be considered a limitation. However, despite more formal definitions based on established criteria, such as the International Classification of Functioning,[13] the literature is characterized by a wide variety of definitions for terms such as mobility impairment and difficulty walking. The definitions that we used were carefully constructed in order to enhance the relevance of the survey questions to patients’ daily lives.
Lastly, the individuals in the care partner sample live with people with MS at the more severely disabled end of the spectrum relative to the overall disability severity that was represented by the people with MS sample. For example, 95% of caregivers reported that the person with MS they assisted experienced negative effects at least twice a week. The specific symptoms experienced at least twice per week included fatigue (80% of those with MS), trouble walking/losing balance (75%), abnormal sensations such as numbness or a feeling of pins and needles (58%), pain (57%), muscle spasms (49%), tremors (19%), and other physical effects (46%).
However, the sample in people with MS is broadly representative of the full range of MS-related disability. This difference would have affected, in the aggregate, the responses of the two groups. Although it would have been theoretically possible to restrict the people with MS sample to a more severely disabled range to match it to the care partner experience of MS, doing so would have meant forgoing a unique opportunity to explore the perspectives of the entire MS population regarding difficulty walking and its ramifications.
Conclusions
Difficulty walking is a common consequence of MS that can adversely affect many aspects of daily life, and can lead to adverse emotional and financial impacts for both patients and their care partners. This study revealed that 70% of people with MS with difficulty walking agreed that it was the most challenging aspect of their MS, yet more than one-third of people with MS who use a mobility device do not use it as much as they should. Additionally, 18% of people with MS stopped exercising after they received a diagnosis of MS. There is also evidence that communication between people with MS and their physicians concerning difficulty walking is suboptimal. Improving such communication may potentially enhance walking ability in many people with MS, leading to improvement in QOL for them and their care partners. In addition, these findings suggest a need for better management and treatment of walking difficulty in patients with MS.
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Acknowledgements
This study was conducted online by HI on behalf of Acorda Therapeutics and the National Multiple Sclerosis Society (USA). The author wishes to thank Celesta Cheo of HI for her contribution in conducting the surveys and for reviewing the data and approving the final version of this manuscript. This project was supported by Acorda Therapeutics, Inc. (Hawthorne, NY, USA) and the National Multiple Sclerosis Society (USA). Nicholas LaRocca received editorial support from The Curry Rockefeller Group, LLC. (Tarrytown, NY, USA). Nicholas LaRocca, PhD, is an employee of the National Multiple Sclerosis Society. The author has no other relevant affiliations or financial involvement with any organization or entity with a financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. Preparation of this manuscript was financed by Acorda Therapeutics, Inc.
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LaRocca, N.G. Impact of Walking Impairment in Multiple Sclerosis. Patient-Patient-Centered-Outcome-Res 4, 189–201 (2011). https://doi.org/10.2165/11591150-000000000-00000
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DOI: https://doi.org/10.2165/11591150-000000000-00000