Impact of Mobility Impairment in Multiple Sclerosis 2 – Patients’ Perspectives
patients and within two years for 67 %) and the appearance of mobility difficulties in almost all patients within 10 years of diagnosis, confirm previous reports on the progressive deterioration of mobility in this disease.21,22
Moreover, the fact that mobility was seen as an issue across all ages again confirms previous findings.7,23,24
As this was a
survey of patients’ perceptions of mobility impairment, it did not request clinical information, such as EDSS scores or other mobility assessments; thus, data are not available to compare clinical and perceived measures of disability. Nevertheless, it is clear that mobility impairment is a significant problem for MS patients, as demonstrated by the high percentage who reported daily and weekly mobility difficulties. Interestingly there were some differences in perceived mobility issues between men and women. Men reported a greater number of significant mobility difficulties than women, while women reported greater levels of fatigue. One possible cause for the increased incidence of mobility problems in men may be work-related. Although participants in this survey were not specifically asked whether they were employed, more women than men had been unemployed in the preceding six months (64 % versus 58 %, respectively, substantially higher than the unemployment rates in the countries surveyed). Furthermore, previous studies have indicated that men with MS are more likely to be employed, either full- or part-time, than women, irrespective of the severity of mobility impairment.6,9
A greater
incidence of fatigue has been previously documented in women,29,30 but this is not a universal finding31,32
and possible reasons for this
discrepancy are not clear. Evident differences were also observed between different countries, for instance mobility impairment was more of an issue for patients in the UK than in Sweden. Country-specific variations in mobility impairment may depend on a host of possible causes including differences in definitions, perceptions and attitudes to mobility impairment symptoms; infrastructure and structure and organisation of healthcare systems and policies. The impact of mobility impairment may also be affected by the extent of support networks including social security and welfare systems; cultural and historical background such as a day-to-day dependency on ambulation and rural or urban residency.
These findings differ from the results of a previous survey of MS patients in the US where 39 % of patients reported that they rarely or never discussed mobility issues with a physician.34
In this study, the majority of patients stated that they discussed their mobility issues with HCPs, similar to findings in the companion article.33
It is possible that
methodological differences between the surveys, including wording of the surveys, or participants’ interpretation of the questions may be responsible for this discrepancy. However, it is important to note that a specific criterion for participation in this survey was experience of mobility impairment. The point of contact for individual patients, however, was particularly dependent on geographical location. Again this may be owing to the cultural and historical background of individual countries, and the structure, organisation and availability of healthcare and social support systems. Surprisingly, the follow-up time to reassessment of mobility issues varied significantly between countries and was especially long in Sweden. One possible explanation is that most patients in Sweden discussed mobility issues only with hospital doctors or neurologists specialising in MS, whereas in other countries patients discussed their mobility with other HCPs, therefore presenting more opportunities for these assessments. It is also possible, however, that differences in the patients’ understanding of what constitutes mobility impairment and what constitutes an assessment may be responsible. Interestingly, the long follow-up
EUROPEAN NEUROLOGICAL REVIEW
Table 6: Healthcare Professionals’ and Patients’ Ranking of Symptoms of Mobility Impairment
Ranking Symptom
Weakness in the legs Numbness in legs
Slowness in movement Difficulty walking
Lack of balance/co-ordination Fatigue
Dropping one foot or dragging one foot behind the other
Healthcare Patients Professionals 3= 5 7 2 1
3= 6
1 6 5 3 4 2 7
Symptoms are ranked in order of prevalence where 1 = most prevalent and 7 = least prevalent.
times reported by patients in Sweden are supported by the long follow-up times reported by Swedish HCPs in the accompanying survey,33
indicating that it might be a genuine phenomenon.
Mobility impairment was shown to have a significant effect on working life in the majority of patients, with approximately two thirds of respondents believing that mobility difficulties had contributed to a loss of earnings, similar to previous findings.6,9–11
Again, there were
significant geographical differences in the number of patients for whom mobility difficulties affected working life. Such variations may reflect differences in cultural and historical background and also social security systems, as well as the presence and availability of facilities to keep people in work and legal and financial support for the unemployed. Between 60–70 % of patients also believed that mobility difficulties significantly impacted on their family and social lives,2 approximately one third exhibiting suicidal ideation.35,36
with It is interesting
to note that many patients are now turning to new social networking media to communicate their experiences with mobility impairment. However, local MS societies clearly remain an integral part of MS management and communication.
When asked to choose words that describe their current feelings about mobility-related issues, the five words most frequently chosen by patients (‘limited’, ‘frustrated’, ‘powerless’, ‘challenged’ and ‘accepting’) had fewer negative connotations than some of the words less often chosen (‘angry’, ‘helpless’, ‘depressed’, ‘demoralised’ and ‘frightened’). The choice of ‘accepting’ in particular suggests that most patients are resigned to having mobility difficulties, but they are inclined to take action to prevent it interfering with their everyday lives as much as possible.37
Comparing Impact of Mobility Impairment in Multiple Sclerosis – Patients’ versus Healthcare Professionals’ Perspectives
Irrespective of any inconsistencies in methodology, the parallel commissioning of two surveys, one targeting HCPs33
and the other
targeting MS patients, enables the broad comparison of each groups’ perspectives on the impact of mobility difficulties for MS patients. Such comparisons are rare in the published literature,38
but may provide
valuable insights. When comparing the two surveys, there were clear discrepancies between HCPs’ and patients’ perspectives on the impact of mobility impairment. Perhaps surprisingly, neurologist and neurology nurses in a recent survey believed that only 56 % of MS patients under their care experienced mobility issues.33
Although this is 119
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