Mobility impairment, particularly walking, is one of the most common and severely disabling consequences of multiple sclerosis (MS), and it has a profound, negative impact on the quality of life of many patients.1,2 Currently, >2 million people are estimated to suffer with MS worldwide,3 and as of 2005 an estimated 380,000 individuals out of 466 million people were estimated to suffer from MS in 28 European countries.4,5 Since MS is most often diagnosed during a person’s most productive years,6,7 and the life expectancy of patients is similar to that of the general population,8 MS is associated with a significant socioeconomic burden,4,9–11 estimated at an annual cost of approximately €12.5 billion in Europe.4 The highest cost is the loss of productivity owing to work absence or early retirement,4,9–12 and one of the major reasons for reduced productivity is the loss of mobility.1 Walking impairment is often the most visible sign of MS and is commonly used as part of the clinical diagnosis by healthcare professionals (HCPs). Indeed, assessment of walking ability is a major component in most clinical outcome measures of MS severity, including the Expanded Disability Status Scale (EDSS) and the MS Functional Composite (MSFC, which includes the timed 25-foot walk, 9-hole peg test and paced auditory serial attention test). However, mobility impairments occurring during the early stages of MS, when treatments are most effective,13–17 are often subtle and may not be detectable on routine physical examination.18
In the first of two articles, the results of a survey, commissioned by Biogen Idec Inc. and conducted among HCPs involved in the management of MS, are presented. The study was designed to explore the impact of MS on patients’ mobility, with the specific aims to examine the HCPs’ perception of the impact of loss of mobility on patients and their management of mobility issues, including the use of clinical outcome measures and treatment options.
The survey, entitled ‘Multiple sclerosis (MS) quality of life research – IMPACT’, was performed by Brand Health (Harpenden, UK) and conducted online. Participants were recruited from the UK, France, Germany, Sweden, Spain and Canada. A total of 182 HCPs (121 neurologists and 61 MS specialist nurses) (see Table 1) who were actively involved in the management of MS patients completed a quantitative questionnaire of approximately 10 minutes duration between the 7 June and 2 July 2010. Eligibility criteria included:
• involvement in the management of MS patients;
• seeing more than 15 MS patients in a three-month period; and
• having more than 15 % of MS patients experiencing some sort of difficulty in walking.
Data are representative of the entire sample population except where specifically stated. It should be noted that this market research survey is descriptive only and contains no detailed statistical analysis or comparisons. When findings are therefore described as significant this relates to the terminology as set down in the original questions.
Summary of Findings
Perceptions on the Impact of Loss of Mobility
The mean number of MS patients seen by individual HCPs participating in the survey in the three months prior to survey completion was 91, with the largest percentage of HCPs (16 %) having seen between 41 and 50 patients. MS nurses saw significantly more patients than neurologists saw during this time period. HCPs estimated that 56 % of MS patients under their care had experienced some loss of mobility, and 46 % had difficulties in walking. Moreover, HCPs believed that patients wanted help to find a physical treatment plan for their mobility issues (mean score = 4.6 on a scale where 1 = not at all and 6 = extremely).
Most HCPs believed that mobility impairment had a substantial impact on MS patients’ lives. Specifically, they considered the loss of mobility owing to MS to be significant (mean score = 5.1 on a scale where 1 = not at all significant and 6 = extremely significant) with considerable impacts on working life (mean score = 5.0), social life (mean score = 4.9) and family life (mean score = 4.7). Ratings were similar between neurologists and MS nurses. Almost all of the HCPs (99 %) stated that patients spoke to them about the impact of mobility impairment, particularly on their ability to work.
More than half (52 % across the entire sample; 79 % in France) of HCPs stated that walking or moving about was the primary activity that patients claimed to be affected by mobility impairment, while activities of daily life including work (27 %) and shopping (10 %), as well as sports and exercise (9 %), were also impacted (see Figure 1). The symptoms most frequently reported to HCPs by patients experiencing walking difficulties were lack of balance and coordination (86 %; 100 % in Canada), inability to walk long distances (85 %), leg weakness (79 %; 91 % in the UK) and fatigue (79 %; 90 % in Germany) (see Table 2).
Managing Mobility Issues
The majority of HCPs (85 %) stated that during a consultation they specifically asked patients whether they were experiencing mobility difficulties. Moreover, 74 % of HCPs also reported that during a consultation most patients spontaneously mentioned any mobility difficulties they were experiencing. Approximately one quarter (26 %; 50 % in the UK) of HCPs stated that patients mentioned their mobility difficulties to another HCP. Of the HCPs surveyed, 80 % believed that they had sufficient knowledge to identify mobility impairment in their MS patients, and 50 % believed they had the appropriate tools at their disposal to assess and quantify mobility impairment (70 % in Canada). The EDSS was the tool most commonly used to assess mobility impairment, followed by the MSFC, MS Walking Scale and Six Spot Step Test (see Table 3). Neurologists were more likely to use the EDSS than MS specialist nurses were (89 % versus 69 %, respectively); of the HCPs that used the EDSS, 34 % conducted assessments at each consultation (see Table 3). Nurses were more likely than neurologists to use the MSFC (38 % versus 23 %, respectively), MS Walking Scale (38 % versus 22 %, respectively), Six Spot Step test (25 % versus 12 %, respectively) and Disease Steps Test (15 % versus 5 %, respectively) to assess mobility loss. The MS Walking Scale was used more in Germany than in the rest of the sample population (37 % versus 27 %, respectively), and the Six Spot Step Test was used more in France than in the rest of the sample population (40 % versus 16 %, respectively).
Approximately three-quarters (74 %) of HCPs believed that they were able to offer both medical and non-medical treatments for walking impairment; this belief was held by considerably more neurologists (79 %) than MS nurses (64 %). HCPs in Canada (87 %) and Germany (90 %) were more likely to believe they were able to offer these treatments. Physiotherapy was the most common treatment offered, followed by muscle relaxants such as baclofen, crutches or walking sticks and wheelchairs (see Table 4). Participants were not questioned about the treatment of patients with nabiximols (Sativex®), a novel therapy for the treatment of spasticity in MS,19 but were asked whether they offered patients 4-aminopyridine (dalfampridine; Ampyra®), a novel therapy for walking disability in MS.20 However, only 8 % of HCPs considered offering 4-aminopyridine to patients. Additional rehabilitation techniques such as occupational therapy were not covered in the survey. There were some differences in the treatments offered among countries, although physiotherapy was consistently the most commonly offered treatment in all countries, and more striking differences were apparent between neurologists and MS specialist nurses (see Table 4). Of all treatments, HCPs considered physiotherapy to be the most successful in resolving patients’ mobility issues (mean score = 3.9 on a scale where 1 = not at all and 6 = completely), but not appreciably more than other treatment options (see Figure 2).
Neurologists and MS nurses reported that they assessed mobility issues somewhat differently. Nurses were more likely to use physician assessment (64 % versus 54 %), while neurologists were more likely to use scales and measurements (48 % versus 33 %), specifically the EDSS and timed 25-foot walk test. There was a wide variety in the frequency of follow-up assessments, to monitor mobility, by country and type of HCP (see Table 5). HCPs in Sweden were more likely to have longer follow-up times between mobility assessments and MS specialist nurses across all countries assessed mobility more frequently than neurologists. Approximately one third of HCPs (35 %; 73 % in Spain) would consider more frequent assessments if new treatments became available, 30 % (55 % in the UK) if the patient deteriorated and 26 % (50 % in Sweden) if they had more time. More neurologists than MS nurses said that new treatments would encourage them to make more frequent assessments (42 % versus 15 %, respectively).
Interactions Between Neurologists and Multiple Sclerosis Specialist Nurses
This study also asked MS specialist nurses to respond to questions about how they interacted with neurologists in the diagnosis and treatment of their patients. Nurses stated that they interacted most with neurologists when assessing mobility issues (mean score = 4.3 on a scale where 1 = not at all and 6 = completely) and when managing and recommending a treatment plan (mean scores = 4.1 and 4.0, respectively), but not as often when writing a prescription (mean score = 3.0). The mean scores were higher for all situations in Sweden (mean scores = 5.0, 4.8, 4.4 and 3.4, respectively), possibly indicating a greater level of communication between HCPs than in other countries.
The results of the IMPACT survey provide a valuable insight into the perceived abilities of HCPs to deal with mobility issues in MS patients, revealing considerable differences between neurologists and MS nurses, and between countries. The vast majority of HCPs (85 %) in the survey stated that they raised the issue of mobility impairment with their patients, or that patients spontaneously raised the issue themselves (74 %). This is in reasonably good agreement with the proportion of patients in the accompanying survey21 that discussed mobility difficulties with a neurologist (71 %) or specialist MS nurse (38 %); patients in the accompanying survey may have brought mobility issues to other types of HCPs. It is important to remember that one criterion for participants in the current survey was having more than 15 % of patients exhibiting mobility impairment, so the HCPs who participated in this survey may be particularly aware of their patients’ mobility issues.
HCPs were generally confident in their ability to identify mobility impairment, although only half of them believed they had the necessary tools at their disposal to fully assess and quantify patients’ mobility difficulties. The most commonly used means of assessment was the EDSS. It is important to note that walking distance is the primary driver of EDSS assessment, and thus it may underestimate other mobility-related difficulties that can be more readily assessed with tools more specifically targeted to mobility. There were substantial geographical differences in the tools used to assess mobility, presumably owing to availability of resources and the professional preferences of the individual HCPs. Geographical differences were also apparent in the reporting of symptoms. This variation may be owing to a real difference in the incidence of each symptom between geographical locations, or more likely to an emphasis on identifying specific symptoms in specific regions. Similarly there were geographical differences in the treatments offered and the means of assessing mobility difficulties that may again be owing to variation in availability of resources or professional preferences. The observation of longer follow-up times to reassessment in Sweden, for example, is in good agreement with the findings in the accompanying patient survey,21 and may reflect the Swedish HCPs view that they would consider more frequent assessments if they had more time. It may also reflect the fact that MS nurses provided more frequent follow-ups and there was relatively stronger communication between neurologists and MS nurses in Sweden. Differences in the perception and management of mobility issues in different countries may also be owing to the different clinical setting of individual HCPs. A recent pilot study aimed at developing a European-wide MS registry noted differences in disease-related characteristics and disease-modifying therapy among countries owing to differences in the type of healthcare centre, e.g. neurological centre, rehabilitation centre or outpatient clinic and types of MS seen, e.g. relapsing-remitting, secondary progressive or primary progressive.22 In the current survey, however, the type of healthcare centre of participating HCPs was not covered in sufficient detail, and the disease type of individual patients was not noted.
Differences were also observed in the responses of neurologists and MS specialist nurses. For instance, there were considerable differences in the assessment tools used. Notably, the EDSS was more commonly used by neurologists than MS specialist nurses, probably because it is based on neurological examination, whereas MS specialist nurses were more likely than neurologists to use the MSFC, which does not require formal neurological examination. In addition, the treatments offered and the time to follow-up assessments differed between the two types of HCPs, presumably owing to availability of resources or professional preference. MS nurses were less likely to believe they had the ability to offer mobility-specific treatments. While the reasons behind this are unknown, it does suggest that patients should contact their neurologist to explore potential treatment options.
MS specialist nurses reported that they interacted with neurologists to a moderate extent in assessing mobility difficulties and managing and developing a treatment plan for their patients. Given the importance that patients attach to mobility impairment,1,2,21,23–25 the level of interaction between neurologists and MS nurses can only be seen as positive. It is to be hoped that similarly high levels of interactivity exist between neurologists, MS nurses and other HCPs, including primary care physicians, general practitioners, family practitioners, occupational therapists, psychiatrists, physiatrists, physiotherapists etc, in order to fully address patients’ mobility issues and thereby improve their quality of life and independence.26
The results from this survey support previous findings on the impact of mobility impairment on MS patients. HCPs believe that mobility impairment has a considerable effect on all aspects of MS patients’ lives, and that whereas they are capable of identifying such impairment, only half believe they have adequate tools to accurately quantify the level of disability. Differences between geographical regions and between neurologists and MS specialist nurses highlight important historical, cultural and social variables that may need to be addressed to improve MS patient care. The perceived lack of effect of even the most common treatment offered, physiotherapy, indicates that there is a substantial unmet clinical need for novel and/or improved therapies to treat mobility impairment. ■