Evaluating the outcome from interventions at any stage of MS is extremely challenging but also of the greatest importance if there is to be ongoing improvement in the process and impact of rehabilitation. Evaluating the effect on the patient requires the use of outcome measures that are scientifically sound (reliable, valid, and responsive) and clinically useful (short, simple, etc.). They also must be appropriate to the sample under study and the intervention being evaluated. In the case of neurorehabilitation, the potential effects are not expected at the levels of pathology and impairment but rather in improving activity and participation (WHO ICIDH 2) and in enhancing the broader, more patient-oriented areas of quality of life, coping skills, and self-efficacy. It is particularly important that the perspective of the patient is incorporated into the measure in a scientifically sound manner.

The standard outcome measure in therapeutic trials in MS, Kurtzke’s EDSS, is inappropriate for evaluating rehabilitation not only because of its scientific limitations (particularly poor responsiveness) but also because it does not measure many of the relevant areas, such as fatigue and cognition, and does not incorporate the perspective of the patient. Consequently, a number of generic measures of disability/ability (Barthel Index [BI], Functional Independence Measure [FIM], Functional Independence Measure/Functional Assessment Measure [FIM/FAM]), participation/handicap (London Handicap Scale [LHS]), and health-related quality of life (The Short Form 36 Health Survey Questionnaire [SF-36]) have been used in MS rehabilitation (Table 4-1).

More recently, a number of MS-specific measures have been developed that are currently undergoing evaluation. These address disability (UK Disability Scale; MS Functional Composite – PASAT, 9 hole peg test and 10 metre times walk; MS Walking Scale), health related quality of life (MS Quality of Life Inventory, Functional Assessment of MS [FAMS], MS QOL 54, The Leeds QOL Scale, the MS Disease Impact Scale (MSIS).

These scales do not, however, capture the area of goal achievement, an essential component of the rehabilitation process. This may be done through using integrated care pathways (ICPs). An ICP is an excellent audit tool that documents when goals are not achieved on time but more usefully indicates why this has occurred, such as the underestimation of cognitive dysfunction or the impact of fatigue.

The philosophy of rehabilitation applies at every stage of the condition, from initial diagnosis to the management of those with severe disability. In order to provide a framework to consider the needs of people with MS, it is helpful to divide the condition into four stages:
1. Diagnosis
2. Minimal disability
3. Moderate disability
4. Severe disability

There are consistent themes running through each of these stages, including:
• Access to up-to-date information
• Appropriate expertise – often of a multidisciplinary nature
• Flexibility and accessibility
• Good communication
• Empowering the person with MS