INPATIENT
REHABILITATION
INPATIENT
REHABILITATION
INPATIENT REHABILITATION IN MS
Author: Jennifer A Freeman and Alan J Thompson
Affiliation: Institute of Neurology, University College London, London, UK
|
Address for correspondence: |
Professor Alan J Thompson, Institute of Neurology, Queen Square, London WC1N 3BG, UK |
Received:26 March 1998 ; Accepted:1 May 1998
The encouraging results of recent therapeutic trials in multiple sclerosis (MS) have focused the attention of the media, health services and business community in a way never previously experienced.1 The results have offered renewed hope for many patients and their families, particularly those with the relapsing–remitting form of the disease. An effect on disease progression has recently been demonstrated in secondary–progressive MS.2 Despite this, there remains a large percentage of patients who are significantly disabled and who will continue to progress.
It is important to reassure patients and their families that a variety of services are available, which provide a range of strategies to help combat many of the everyday problems experienced by them. These include general healthcare, provision of information,3 symptomatic management4 and supportive services.
Inpatient rehabilitation is one such service, which focuses on providing a co-ordinated multidisciplinary approach to management. While the role and mechanisms of MS rehabilitation have yet to be adequately defined, encouraging results are emerging from a number of recent outcome studies. This article provides a broad overview of the principles of rehabilitation, outlines the key aims and elements of successful inpatient programmes, and reviews some of the recent advances in evaluation through clinical outcome studies and integrated care pathways.
REHABILITATION
Rehabilitation has been defined as an active process of change by which a person who has become disabled acquires and uses the knowledge and skills necessary for optimal physical, psychological and social functioning.5 The underlying principle is that the affected person and their family are central to the planning of and participation in any rehabilitation programme. To achieve this they require an understanding of the condition and the strategies that will help them to cope with it.6 Education is hence a key factor in the rehabilitation process.
In essence, rehabilitation aims to assist individuals in achieving the best possible quality of life, within the limits of their disease by:7
The first symptoms of MS tend to occur in young adults, at a stage in their lives when they are establishing their careers, setting up home and having a family. The variable and unpredictable nature of the disease course means that people with MS face not only the prospect and reality of increasing disability, but also the uncertainty of when new relapses will occur or when established disability will set in.8 These problems are lifelong, evolving over decades; the lifespan of people with MS is only marginally reduced.9
Because all parts of the central nervous system (CNS) can be affected, a wide range of diverse symptoms may occur, interfering with mobility, upper-limb function, bladder, bowel and sexual function, speech and swallowing and vision and cognition. In relation to mobility, it is estimated that 50% of patients require a walking aid or use of a wheelchair 15 years after diagnosis.10 The impact on full-time employment is dramatic. Unemployment rates range from 53%11 to as high as 75–80%,12 with many patients leaving work within 5 years of being first diagnosed. Perhaps not surprisingly, MS is associated with high divorce rates, and high incidences of depression and suicide.13
Multiple sclerosis is thus ideally suited to the philosophy of rehabilitation. The multiplicity of symptoms and the manner in which they interact often result in complex disabilities that require the knowledge, expertise and collaboration of a variety of healthcare and social service professionals.
Attempting to treat one symptom without taking into account others is frequently unsuccessful.14 Perhaps more importantly, attempting to treat symptoms without actively involving the patient and the family in the decision-making process may mean that the resources are misdirected and under-utilized.
The process of MS inpatient rehabilitation has been described by a number of authors (Figure 1).15–18 While no two centres practice or deliver care in an identical way, the literature demonstrates that there is a shared conceptual and practical framework to its practice. Some of the key elements identified are described below.
A multidisciplinary team approach
To be effective, inpatient rehabilitation requires co-ordinated input from a range of professionals.19 While the precise composition of this team varies, a number of services have been identified, which are considered central to comprehensive rehabilitation:
Additional team members usually include psychologists, social workers and dieticians.
Assessment and selection
Accurate, comprehensive and detailed assessment enables appropriate targeting of resources. It is the first and most crucial step in the rehabilitation process. Given the wide variety of interacting physical, psychosocial and cognitive problems associated with MS, assessment can be an extremely challenging and difficult process which is achieved most effectively by an experienced multidisciplinary team, who utilize information from their own disciplines and work together to identify areas of potential improvement.18
An individually tailored, patient-centred, goal-setting approach
The initial assessment should allow the team to identify the extent of change possible (a long-term goal) and the length of time required to achieve it. Designing a goal-oriented rehabilitation programme is difficult and it should be tailored to meet the needs of the individual at a specific point in time. It must take into account factors such as fatigue, temperature lability and cognitive problems, which are common in MS. The programme focuses on achieving the long-term goal through a series of small measurable steps (short-term goals), which are designed to be easily identified and appreciated by the person with MS, their carer and all members of the rehabilitation team.
By focusing on different elements of the problem in a co-ordinated fashion, the overall goals of intervention can be achieved. For example, mobility can be improved by strengthening muscles, teaching new transfer techniques (e.g. bed to chair), providing information about tone and fatigue management, improving access to the home, etc. Crucial to the success of the programme is that the goals must be important to the person with MS; if they are not, there is a high likelihood that they will not be achieved or that, on return to the home environment, they will not be maintained.
Collaboration
Inpatient rehabilitation is only one part of the comprehensive model of care for people with MS and should not be viewed in isolation. It should not be considered as a separate phase of care, but as an integral part of the long-term management process. Communication and co-operation between those involved in the rehabilitation programme and other healthcare, social service and voluntary sectors is essential to meet the needs of the individual in an effective and timely manner.
Rehabilitation is labour intensive and costly.20 It is well recognized that evaluation of its effectiveness is needed to enable evidence-based clinical decision making and to ensure continued improvements in patient management.21 To be credible, effectiveness needs to be established in a scientifically sound and clinically relevant manner. The difficulties in achieving this have been well documented both in the field of MS22,23 and rehabilitation.24 It is thus an extremely challenging area of research, containing a number of unsolved methodological problems. Encouraging results are emerging from a number of recent studies, however.25,26 These are discussed in detail later.
Measuring outcome
It is widely accepted that measuring the results of an intervention (its outcome) is an important means of determining its effectiveness.27 In evaluating rehabilitation, it is necessary to select relevant outcomes and to identify appropriate instruments with which to measure them. This requires a thorough knowledge of the problems of MS, the broad aims of rehabilitation and what change can be expected as a result of the intervention. It is also essential to choose measurement instruments that are both scientifically sound and clinically useful, and that can be incorporated into a methodologically sound clinical trial.
A framework for choosing which outcomes to measure
Over the past decade, many clinical trials have used the International Classification of Impairments, Disabilities and Handicaps (ICIDH)28 as a framework for choosing which outcomes to measure. This is currently being reviewed extensively and, at the time of going to press, a new system termed the International Classification of Impairments, Activities and Participation (ICIDH 2)29 is undergoing systematic field trials, the results of which will be published in 1999.
This ICIDH framework has proved extremely useful, enabling outcomes to be measured in relation to changes in disability, handicap and quality of life. It does not, however, capture other important aims of rehabilitation such as goal achievement, self-efficacy and patients' perceptions of their capacity to cope. Some of these aspects may be measured by the use of Integrated Care Pathways (ICPs), which are also an excellent audit tool for monitoring many aspects of service delivery.30
Measurement instruments
Integrated care pathways: An ICP is a document that details the interventions planned for a given episode of care. It details aspects of service delivery and patient management (such as number and timing of assessments and treatments, goal achievement) and records when and why deviations from the rehabilitation programme have occurred. These departures from the pathway, termed 'variances', are documented, coded and analysed to provide information directly related to service delivery and to the individual's progress in terms of goal achievement. Group analysis of this information enables the identification of difficulties or inadequacies within the rehabilitation process, and highlights the reasons for goal achievement. This, in turn, enables informed changes to be made to the delivery of care.
This process is well illustrated by a recent study that compared three sequential cohorts of inpatient rehabilitation patients with MS.31 The three groups (n = 37, 50 and 38, respectively) were all of similar age (39–43 years) and severity of disease (median Expanded Disability Status Scale [EDSS] score 7.0). In terms of goal achievement, the results of the first cohort indicated that the key factors preventing success were an underestimation of cognitive dysfunction, inadequate management of fatigue and neurological deterioration. As a consequence, changes in clinical practice were introduced: education sessions were undertaken and clinicians encouraged to increase the number of goals pertaining to cognitive function and fatigue management. Analysis of the subsequent two cohorts demonstrated the success of these changes; a steady increase in the number of goals had been achieved. In terms of service delivery, the ICP highlighted difficulties including inadequate carer involvement, poor secretarial support and badly timed admissions. Again, these issues were addressed and reviewed: the mean length of stay decreased from 28 days to 18 days, carer involvement increased from 66% to 75%, and standards relating to documentation were improved. This example highlights the usefulness of the ICP as a tool to improve both process and outcome.
Outcome measures: The quality of outcome data is determined, in part, by the quality of the instruments used to produce it. Consequently, considerable care is required in choosing appropriate measurement instruments. It is essential that the instruments have been evaluated carefully both for their clinical usefulness and their scientific soundness.32
Clinical usefulness refers to aspects such as whether the instrument is user-friendly, practical to administer and inexpensive. Scientific soundness refers to whether the instrument is reliable, valid and responsive to clinically relevant change. Knowledge about these properties is essential to enable accurate interpretation of the information gained.33
An increasing range of instruments, measuring many aspects of health status, is now available for use in the evaluation of rehabilitation. These include:
In general, these instruments are rated by health professionals, and although patient-oriented, they rarely take into account how patients perceive and react to their disease. This perspective is addressed by health-related quality-of-life (QOL) measures which, by definition, are patient rated. Examples of such measures include the 36-item Short Form Health Survey Questionnaire (SF-36)41 and the MS QOL 54.42 It is important to emphasize that although these QOL instruments assess many important areas addressed by rehabilitation (e.g. emotional status, pain and fatigue), they may not be sufficiently detailed to pick up the small but clinically relevant changes which might be captured by instruments measuring more specific constructs, such as the Fatigue Severity Scale43 and General Health Questionnaire.33
It is recognized that areas exist that are not addressed by the instruments described, but which may well be influenced by the educational philosophy of rehabilitation. These include development of coping skills, increased understanding of the condition and improved self-management and self-efficacy. Instruments addressing some of these areas are currently being developed.44
CLINICAL TRIALS EVALUATING REHABILITATION
There are different approaches to evaluating the outcome of rehabilitation intervention:
Both approaches are valid, providing different but complementary information.17
Trials evaluating the component parts
Three randomized controlled studies investigating the effectiveness of specific aspects of intervention have been published recently.26, 45, 46 The study by Petajan et al.26 evaluated the effectiveness of a 15-week aerobic training programme on fitness and quality of life in 54 MS patients. Their results demonstrated significant improvements (P < 0.05) in a range of physiological benefits at the end of 15 weeks, and transient psychological benefits between weeks 5 and 10 of the study period.
Fuller et al.45 evaluated the effectiveness of a single inpatient admission physiotherapy on mobility and related activities of daily living. Forty-five patients with MS were randomized to a treatment group or a delayed treatment group, and assessed at baseline and 9 weeks. At the 9-week assessment the only statistically significant difference found between the two groups was a reduction, in the treatment group, of mobility-related distress (P < 0.001) as measured on a visual analogue scale.
Finally, the study by Vahtera et al.46 evaluated the role of pelvic floor exercises together with electric stimulation in the management of urinary symptoms, and demonstrated a significant benefit (P < 0.001) particularly in male patients.
Trials evaluating the package of care
Over the past decade a number of clinical trials have investigated the outcome of the package of comprehensive multidisciplinary rehabilitation (Table 2).25, 47–55 The results of these trials suggest that rehabilitation in MS has a beneficial effect on disability, which is more marked in the relapsingremitting group than in those patients with the progressive form.50, 52–54 The few studies that have addressed handicap25,52,54,55 and quality of life55–57 suggest that positive benefits also occur in these areas. Unfortunately the interpretation of many of these studies is limited by their design; most are uncontrolled single-group studies with small sample sizes and, in the main, assessments are limited to those undertaken on admission and discharge, with relatively little attention made to the duration of benefit. Despite these limitations, valuable information has been gathered. Importantly, recent improvements in methodology have been made.
The results of a stratified randomized wait-list controlled study involving 66 patients with progressive MS have recently been published.25 The treatment group underwent a short period (25 days) of multidisciplinary inpatient rehabilitation. All patients were assessed at 0 and 6 weeks with a range of measures including disease severity (EDSS and Functional Systems), disability (the Functional Independence Measure) and handicap (the London Handicap Scale). At the end of the 6 weeks, although the neurological status in both groups remained the same, the treatment group showed significantly improved levels of disability (P < 0.001) and handicap (P < 0.01) compared to the control group.
This study did not, however, address the key issue of longer-term maintenance of change once the patient has returned home. To date, only a few uncontrolled studies have addressed this question.51,53–55 These studies suggest that, following discharge, benefit may be maintained, at least in part, in a variety of dimensions including disability,51,54,55 handicap,54,55 emotional well-being and quality of life.55
In a study that measured these dimensions at 3-month intervals for 1 year following rehabilitation, it was shown that improvements in disability and handicap were maintained for an average of 6 months, and quality of life for an average of 10 months, despite a deterioration in the group's neurological status (29% of patients increased their EDSS score by > 1.0 point by the 12-month assessment).55 Interestingly, both this study and that of Kidd and Thompson54 demonstrated that handicap continued to improve following discharge from rehabilitation, peaking between 3 and 6 months. The results of these studies emphasize the importance of continuity of care between the rehabilitation environment and the community and social service sectors, if the needs of the person with MS are to be met effectively in the longer term.
Great strides have been made in
our understanding of MS in the last decade, in parallel with the development
of new disease-modifying pharmacological therapies, which have been shown to
reduce relapse rate and slow progression. Although these advances offer renewed
hope to MS patients, a clinically meaningful (long-term) effect of drug therapies
on disability has yet to be demonstrated, the aetiology of MS remains unknown,
and neither prevention nor cure is likely in the near future. Progressive disability
remains the experience of most individuals and symptomatic management and the
provision of supportive services continues to be the cornerstone of healthcare
intervention. It is crucial that we actively strive to investigate the effectiveness
of these interventions, to ensure that our clinical decision making is evidence-based,
and that the services delivered are of the highest quality.
REFERENCES
1.Thompson AJ. Management of MS: towards defining a model of care. MS Update 1994; 8: 36–38.
2.Kappos L, Polman C, Pozzilli C et al. and the European Study Group on IFN beta-1b in secondary progressive MS. Interferon beta-1b delays progression of disability in secondary progressive multiple sclerosis: results of the European Multicentre Study. J Neurol 1998; 245: 357.
3.Johnson J. What can specialist nurses offer in caring for people with multiple sclerosis? In: Multiple Sclerosis: Clinical Challenges and Controversies (Thompson AJ, Polman CH, Hohlfeld R, eds). London: Martin Dunitz Ltd, 1997; pp335–343.
4.Clanet MG, Azais-Vuillemin C. What is new in the symptomatic management of multiple sclerosis? In: Multiple Sclerosis: Clinical Challenges and Controversies (Thompson AJ, Polman CH, Hohlfeld R, eds). London: Martin Dunitz Ltd, 1997; pp235–241.
5.Disability Committee of the Royal College of Physicians. National Concepts of Rehabilitation. London: Royal College of Physicians Publications, 1991.
6.Hatch J. Building partnerships. In: Multiple Sclerosis: Clinical Challenges and Controversies (Thompson AJ, Polman CH, Hohlfeld R, eds). London: Martin Dunitz Ltd, 1997; pp345–351.
7.Kesselring J. Long-term rehabilitation in multiple sclerosis. In: Frontiers of Multiple Sclerosis II (Siva A, Kesselring J, Thompson AJ, eds). London: Martin Dunitz Ltd, 1998, in press.
8.Campion, K. Meeting multiple needs. Nursing Times 1996; 92: 28–30.
9.Koch-Henrikson N, Bronnum-Hansen H, Stenager E. Underlying cause of death in Danish patients with multiple sclerosis: results from the Danish Multiple Sclerosis Registry. J Neurol Neurosurg Psychiatry 1998; 56: 56–59.
10.Weinshenker BG. Natural history of multiple sclerosis. Ann Neurol 1994; 36(suppl): S6–S11.
11.Rodriguez M, Siva A, Ward J et al. Impairment, disability and handicap in multiple sclerosis: a population-based study in Olmsted County, Minnesota. Neurology 1994; 44: 28–33.
12.Harvey C. Economic Costs of Multiple Sclerosis: How much and who pays? New York: National Multiple Sclerosis Society: Research and Medical Programs 1995.
13.Sadovnick AD, Remick RA, Allen J et al. Depression and multiple sclerosis. Neurology 1996; 46: 628–632.
14.Thompson AJ. Rehabilitation of progressive neurological disorders: a worthwhile challenge. Curr Opin Neurol 1996; 9: 437–440.
15.Scheinberg L, Holland NJ, Kirschenbaum M et al. Comprehensive long-term care of patients with multiple sclerosis. Neurology 1981; 31: 1121–1123.
16.Schapiro RT. The rehabilitation of multiple sclerosis. Journal of Neurologic Rehabilitation 1990; 4: 215–217.
17.La Rocca NG, Kalb RC. Efficacy of rehabilitation in multiple sclerosis. Journal of Neurologic Rehabilitation 1992; 6: 147–155.
18.Johnson J, Thompson AJ. Rehabilitation in a neuroscience centre: the role of expert assessment and selection. British Journal of Therapy and Rehabilitation 1996; 3: 303–308.
19.European Federation of Neurological Societies Task Force. Standards in neurological rehabilitation. Eur Neurol 1997; 4: 325–331.
20. Bourdette DN, Prochaazkaa AV, Mitchell W et al. Health care costs of veterans with multiple sclerosis: implications for the rehabilitation of MS. VA Multiple Sclerosis Rehabilitation Study Group. Arch Phys Med Rehabil 1993; 74: 26–31.
21.Rosenberg W, Donald A. Evidence-based medicine: an approach to clinical problem-solving. BMJ 1995; 310: 1122–1126.
22.Ellison GW, Myers LW, Leake BD et al. Design strategies in multiple sclerosis clinical trials. Ann Neurol 1994; 36(suppl): S108–S112.
23.Whitaker JN, McFarland HF, Rudge P, Reingold SC. Outcomes assessment in multiple sclerosis clinical trials: a critical analysis. Mult Scler 1995; 1: 37–47.
24.Pollock C, Freemantle N, Sheldon T et al. Methodological difficulties in rehabilitation research. Clin Rehabil 1993; 7: 63–72.
25.Freeman JA, Langdon DW, Hobart JC, Thompson AJ. The impact of inpatient rehabilitation on progressive multiple sclerosis. Ann Neurol 1997; 42: 236–244.
26.PetajanJH, Gappmaier E, White AT et al. Impact of aerobic training on fitness and quality of life in multiple sclerosis. Ann Neurol 1996; 39: 432–441.
27.Sackett DL, Rosenberg WM, Gray JAM et al. Evidence based medicine: what it is and what it isn't. BMJ 1996; 312: 71–72.
28.International Classification of Impairments, Disabilities and Handicaps. Geneva: World Health Organization 1980.
29.ICIDH2: International Classification of Impairments, Activities and Participation. A Manual of Dimensions of Disablement and Functioning. Beta-1 draft for field trials. Geneva: World Health Organization 1997.
30.Rossiter D, Thompson AJ. Introduction of integrated care pathways for patients with multiple sclerosis in an inpatient neurorehabilitation setting. Disabil Rehabil 1995; 17: 443–448.
31.Rossiter D, Thompson AJ. Integrated care pathways in multiple sclerosis: completing the audit cycle. Mult Scler 1998; 4: 85–89.
32.Hobart JC, Lamping DL, Thompson AJ. Evaluating neurological outcome measures: the bare essentials. J Neurol Neurosurg Psychiatry 1996; 60: 127–130.
33.Streiner DL, Norman GR. Health Measurement Scales: a Practical Guide to the Development and Use. Oxford: Oxford University Press, 1989.
34.Mahoney FI, Barthel DW. Functional evaluation: the Barthel Index (BI). Md Med J 1965; 14: 61–65.
35.Granger CV, Cotter AC, Hamilton BB et al. Functional assessment scales: a study of persons with multiple sclerosis. Arch Phys Med Rehabil 1990; 71: 870–875.
36.Harwood RH, Ebrahim S. Manual of the London Handicap Scale. Nottingham: University of Nottingham, Department of Health Care of the Elderly, 1995.
37.Stewart G, Kidd D, Thompson AJ. The assessment of handicap: an evaluation of the Environmental Status Scale. Disabil Rehabil 1995; 17: 312–316.
38.Goodkin DE, Hertsgaard D, Seminary J. Upper extremity function in multiple sclerosis: improving assessment sensitivity with boxandblock and ninehole peg tests. Arch Phys Med Rehabil 1988; 68: 94–97.
39.Vaney C, Blaurock H, Gattlen B, Meisels C. Assessing mobility in multiple sclerosis using the Rivermead Mobility Index and gait speed. Clin Rehabil 1996; 10: 216–226.
40.Whurr R. Aphasia Screening Test (2nd edn). London: Whurr Publishers, 1997.
41.Ware JE, Snow KK, Kosinski M, Gandek B. SF36 Health Survey: Manual and Interpretation Guide. Boston, Massachusetts: The Health Institute, New England Medical Centre, 1993.
42.Vickrey BG, Hays RD, Harooni R et al. A health-related quality of life measure for multiple sclerosis. Qual Life Res 1995; 4: 187–206.
43.Krupp LB. Mechanisms, measurement and management of fatigue in multiple sclerosis. In: Multiple Sclerosis: Clinical Challenges and Controversies (Thompson, AJ, Polman CO, Hohlfeld R, eds). London: Martin Dunitz Ltd, 1997; pp283–291.
44.Schwartz CE, Coulthard-Morris L, Zeng MAQ, Retzlaff P. Measuring self-efficacy in people with multiple sclerosis: a validation study. Arch Phys Med Rehabil 1996; 77: 394–398.
45.Fuller KJ, Dawson K, Wiles CM. Physiotherapy in chronic multiple sclerosis: a controlled trial. Clin Rehabil 1996; 10: 195–204.
46.Vahtera T, Haaranen M, Viramo-Koskela AL, Ruutiainen J. Pelvic floor rehabilitation is effective in patients with multiple sclerosis. Clin Rehabil 1997; 11: 211–219.
47.Feigenson JS, Scheinberg L, Catalano M. The cost-effectiveness of multiple sclerosis rehabilitation: a model. Neurology 1981; 31: 1316–1322.
48.Greenspun B, Stineman M, Agri R. Multiple sclerosis and rehabilitation outcome. Arch Phys Med Rehabil 1987; 68: 434–437.
49.Reding MJ, La Rocca NG, Madonna M. Acute-hospital care versus rehabilitation hospitalisation for management of nonemergent complications in multiple sclerosis. J Neurol Rehab 1987; 1: 13–17.
50.Carey RG, Seibert JH. Who makes the most progress in inpatient rehabilitation? An analysis of functional gain. Arch Phys Med Rehabil 1988; 69: 337–343.
51.Francabandera FL, Holland NJ, WieselLevison P, Scheinberg LC. Multiple sclerosis rehabilitation: inpatient versus outpatient. Rehabil Nurs 1988; 13: 251–253.
52.Kidd D, Howard RS, Losseff NA, Thompson AJ. The benefit of inpatient neurorehabilitation in multiple sclerosis. Clin Rehabil 1995; 9: 198–203.
53.Aisen ML, Sevilla D, Fox N. Inpatient rehabilitation for multiple sclerosis. J Neurol Rehab 1996; 10: 43–46.
54.Kidd D, Thompson AJ. A prospective study of neurorehabilitation in multiple sclerosis (letter). J Neurol Neurosurg Psychiatry 1997; 62: 423– 424.
55.Freeman JA, Langdon DW, Hobart JC, Thompson AJ. Long-term effects of neurorehabilitation in multiple sclerosis: a longitudinal study. Neurology 1998, in press.
56.Jonsson A, Dock J, Ravnborg MH. Quality of life as a measure of rehabilitation outcome in patients with multiple sclerosis. Acta Neurol Scand 1996; 93: 229–235.
57.Fabio RP, Choi T, Soderberg J, Hansen CR. Healthrelated quality of life in patients with progressive multiple sclerosis: influence of rehabilitation. Phys Ther 1997; 77: 1704–1716.
