Inpatient rehabilitation in multiple sclerosis

Patients.

Eligible patients had a diagnosis of clinically or laboratory-supported definite MS,2 were in the progressive phase of the disease,3 and were considered suitable for inpatient rehabilitation.4 Patients were excluded if they were within 1 month of relapse or receiving steroids, had other diseases that may have interfered with outcome, or were cognitively impaired such that they were unable to give informed consent. Patients were admitted sequentially into the study until 50 subjects were recruited.

Measures.

Routine demographic and diagnostic data were recorded for all patients. Severity of MS was determined by Kurtzke’s Functional Systems (FS) and Expanded Disability Status Scale (EDSS).5 Disability (functional change) and handicap (socioeconomic limitations) were the study’s primary outcome measures. Disability was measured using the motor domain of the Functional Independence Measure (FIM),6 a 13-item scale that rates the patient’s ability to undertake basic daily functional activities. Handicap was measured using the London Handicap Scale (LHS),7 a six-item self-report questionnaire that rates a range of dimensions including mobility, orientation, occupation, and social integration. In addition, self-report measures of health-related quality of life (HRQOL) were assessed with the 36-item Short Form Health Survey Questionnaire (SF-36),8 and emotional well-being was assessed with the 28-item General Health Questionnaire (GHQ).9

Procedures.

Patients were assessed at six time points: on admission, at discharge, and at 3-month intervals for 1 year after discharge. At each assessment the measures were randomly administered to prevent systematic bias resulting from practice effects or fatigue. Neither assessors nor patients were permitted to see their responses from previous occasions.

The following information was also collected at each time point: number of relapses in the 6 months preceding and during the study2; pharmacologic details; social service, outpatient therapy, and hospitalization details; and significant changes in social circumstances (e.g., divorce).

The rehabilitation program.

All patients participated in an individualized, goal-oriented, multidisciplinary inpatient program based on a model of comprehensive care,10 the essential features of which have been recently described.1,4

Sample: Baseline characteristics.

Over a 12-month period 73 of the 186 MS patients referred for assessment for rehabilitation were selected for admission. Twenty-two patients failed to satisfy entry criteria, and one declined to participate. Complete data for all assessment points were available on 44 patients. Five of the 6 patients with incomplete data were severely disabled (EDSS ≥ 7.0). Two died shortly before the final assessment, 3 declined a proportion of the reviews, and 1 was lost to follow-up.

Demographic and disease characteristics are summarized in table 1 and baseline scores for all measures in table 2. The FIM motor domain scores showed wide variations in functional ability for a range of activities. The LHS and SF-36 scores indicated that mobility, physical and social functioning, occupation, and energy were all markedly affected. Using pre-established criteria,9 74% of patients scored five points or more on the GHQ, indicating the presence of emotional disturbance.

The mean duration of the inpatient stay was 23 days (SD ± 11.5, range 10 to 62). Of the 50 patients, 35 were admitted from home, 13 from hospital, and 1 each from a rehabilitation unit and a residential unit. On discharge 48 patients returned home, 1 to a hospital, and 1 to a residential unit. Table 3 details the additional hospital and community services recommended on discharge and the time taken for them to commence.

Summary measures (table 4). Summary measures demonstrate that, on average, improvements were maintained in disability and handicap for 6 months, emotional well-being for 7 months, and HRQOL (physical component) for almost 10 months after discharge. The wide range and large 95% CIs indicate the marked variability in duration of benefits between individuals.

Group time series data (figure, table 5). Median EDSS scores demonstrated a gradual deterioration during the 12-month period, which was supported by a changing distribution of FS scores, particularly on the pyramidal, sensory, brainstem, and sphincter scales. Improvement was seen across all other measures during the inpatient stay. These gains declined in varying patterns after discharge. In disability and handicap, the FIM and LHS scores steadily lowered, remaining only marginally above baseline at the 9- and 12-month assessments. In contrast, the GHQ scores demonstrated sustained improvement during the entire 12 months. Improvement in the SF-36 scores peaked at 3 months in the physical dimension and at 6 months in the mental dimension.

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Figure. Time series plots of the group scores for each outcome measure. (A) Neurological status. Expanded Disability Status Scale (EDSS) ↑ scores indicate deterioration. (B) Disability. Functional Independence Measure (FIM) ↑ scores indicate improvement. (C) Handicap. London Handicap Scale (LHS) ↑ scores indicate improvement. (D) Emotional well-being. General Health Questionnaire (GHQ) ↑ scores indicate deterioration. (E and F) Health-related quality of life, physical (E) and mental (F). 36-item Short Form Health Survey Questionnaire (SF-36) ↑ scores indicate improvement.

Individual’s time series data.

Twenty-nine percent of patients demonstrated neurologic deterioration during the study, as defined by an unconfirmed increase of one EDSS point or more at the 12-month assessment.13 Fifty-one percent of patients whose FIM score improved (n = 41) peaked at discharge. Over the 12 months, 10 patients markedly deteriorated in functional performance (loss of ≥15 FIM points) between consecutive assessments. This coincided with a relapse in five patients and an appendectomy in one. Seventy-four percent of patients whose handicap improved (n = 35) peaked after discharge.

Patients reporting emotional disturbance (>5 GHQ points) decreased from 74% at admission to 47% at 12 months. Of these, the percentage reporting “markedly abnormal” levels of disturbance (≥15 GHQ points) decreased from 34% on admission to 15% at 12 months. In the SF-36 physical dimension, 54% of patients reported maximum scores at 3 months and 28.2% at 6 months. In contrast, in the mental dimension, 21% of patients peaked at 3 months, with most (61%) peaking at 6 months.

Outcome and summary measures.

The neurologic status of the group declined over the study period. This may be partly accounted for by a selection bias. Patients were in the more advanced stages of MS, had a range of complex interrelated disabilities,14 and were frequently referred because of recent deterioration.4 The severity and range of disabilities experienced by this sample were typical of other MS rehabilitation studies,15-17 as was the overall improvement in disability seen at discharge.15-21

Average disability scores showed a peak at discharge and then a slow deterioration with time. This pattern is unsurprising. First, the progressive nature of MS means that deterioration over time is the norm. Second, the rehabilitation environment is specifically designed to maximize patients’ performance; suitable aids and equipment are available, and the staff offer advice and encouragement and are experienced in facilitating patients, both physically and emotionally. Many of these factors may not completely transfer to the home environment. Furthermore, patients often reported that tasks were completed by the caregiver(s) for ease and speed, even though they could perform the task themselves. The FIM scoring method requires that the patient be assessed on performance, not capability; scores therefore reflected what the patients actually did (or were allowed to do) in the community rather than what they were capable of achieving. This may further explain why higher scores were achieved in the rehabilitation environment.

Although the paucity of research in MS rehabilitation makes it difficult to compare the handicap of this sample with others, some common features are apparent. For example, as with others, mobility, occupation, and physical independence were most affected,22 and levels of unemployment were high (76%).22,23 Further improvements in level of handicap occurred in 77% of patients after discharge, supporting results of an earlier study that demonstrated continued improvements in handicap 3 months after discharge.17 Our results indicate that additional improvements can occur over an even longer period of time, supporting the argument for long-term community-based studies.7

The data for HRQOL are difficult to interpret. Their definition and measurement are far more complex than impairment and disability (for which a relatively precise quantification of performance can be undertaken), and they are influenced by a wide variety of social and environmental factors.24 Proposed explanations for these results are therefore speculative. Lower levels of health were reported in every SF-36 dimension compared with normative values for the healthy British population25 and the general US population.8 Similar to other MS samples, the dimensions most affected were physical functioning and role limitations.25,26 Both the group and individual data demonstrated that the SF-36 physical and mental components behaved differently. This is predictable because the components were designed to measure different concepts,8 which could be expected to change at a variable rate.7

Most patients demonstrated sustained improvements in emotional well-being throughout the study. No previous rehabilitation studies have monitored emotional well-being over the long term; however, our findings at discharge support previous data.27 It is interesting to postulate why this sustained improvement occurred. Rehabilitation differs from many medical specialties in that it is an active process of education whereby the disabled persons acquire and use knowledge and skills to optimize their physical, psychological, and social function.28 Studies demonstrate that emotional distress is associated with perceived control over health outcomes.29 Some suggest the educational processes of rehabilitation empower patients to become more actively involved in their health and welfare needs, thereby increasing their perceived control.30 Our experience supports this. Alternative explanations also exist. Emotional distress is associated with physical disability.31 The reduction in disability that occurred could partly account for improvements in emotional well-being, at least in some individuals. Furthermore, the additional and regular attention received throughout this study may have resulted in improved well-being. All these factors may interact.

A range of additional hospital and community services was recommended after discharge. In our experience, the strength of the support system to which patients return has a direct impact on the long-term success of the rehabilitation program. This is an important but neglected area of research and one that will be discussed in a subsequent article.

Evaluation of methodology.

Ideally, a control group would have been incorporated. Ethical and logistic considerations mean that this type of study is not well-suited to a controlled design.32 Consequently, a randomized controlled trial, investigating outcome in the short term, was undertaken in parallel,1 providing complementary information to aid interpretation of results.

The generalizability of this study is limited; all subjects were in the progressive phase of MS, all were moderately or severely disabled, and data were acquired from one unit. There is no assurance that our observations will apply to groups free of these selection biases. However, the characteristics of this sample are similar to those in other rehabilitation studies,15,16 suggesting it is representative of patients with MS undergoing rehabilitation.

No trial, particularly if it is longitudinal in design, can be isolated from extraneous factors. Additional confounding factors include the variable, unpredictable, and generally progressive nature of the disease course and the influence of social and environmental factors other than rehabilitation intervention. Key confounding variables were therefore recorded and will subsequently be reported.

Missing data are a problem common in longitudinal studies.8 The follow-up rate of this study (88%) is considered high. Details of all patients with incomplete data were recorded. Because they were among the most severely disabled, all available information was included at each time point to minimize bias.

Clinical implications.

These results suggest that formal and structured links between the rehabilitation setting and community services are needed to achieve and carry over many rehabilitation goals. This finding is in agreement with a number of reports28 and surveys33 of people with MS. Inpatient rehabilitation should not be viewed in isolation. Continuity of care is required between different settings to ensure that inpatient rehabilitation does not increase fragmentation of services, but serves to focus elements into an integrated system of comprehensive care that responds to the ever-changing needs of the patient.

No guidelines exist regarding the optimal time to review patients after discharge.34 Currently decisions are made on a clinical basis. These results suggest that review of patients is necessary because the benefits gained decline over time, and readmission for further rehabilitation may be necessary as new problems arise. The summary measures indicate that, in general, 6 months may be the most relevant time for review because this was when performance declined to the baseline level in most of the outcomes. The individual data, however, highlight that rigid guidelines are inappropriate, thus supporting the argument that services must be flexible and responsive to individual needs.17,33,34