Abstract
BackgroundIntravenous steroids are routinely used to treat disabling relapses in multiple sclerosis (MS). Theoretically, the infusion could take place at home, rather than in hospital. Findings from other patient populations suggest that patients may find the experiences of home relapse management more desirable. However, formal comparison of these two settings, from the patients' point of view, was prevented by the lack of a clinical scale. We report the development of a rating scale to measure patient's experiences of relapse management that allowed this question to be answered confidently.MethodsScale development had three stages. First, in-depth interviews of 21 MS patients generated a conceptual model and pool of potential scale items. Second, these items were administered to 160 people with relapsing-remitting MS. Standard psychometric techniques were used to develop a scale. Third, the psychometric properties of the scale were evaluated in a randomised controlled trial of 138 patients whose relapses were managed either at home or hospital.ResultsA preliminary conceptual model with eight dimensions, and a pool of 154 items was generated. From this we developed the MS Relapse Management Scale (MSRMS), a 42-item with four subscales: access to care (6 items), coordination of care (11 items), information (7 items), interpersonal care (18 items). The MSRMS subscales satisfied most psychometric criteria but had notable floor effects.ConclusionsThe MSRMS is a reliable and valid measure of patients' experiences of MS relapse management. The high floor effects suggest most respondents had positive care experiences. Results demonstrate that patients' experiences of relapse management can be measured, and that the MSRMS is a powerful tool for determining which services to develop, support and ultimately commission.
Highlights
Intravenous steroids are routinely used to treat disabling relapses in multiple sclerosis (MS)
It is important to extend this model to the use of intravenous methylprednisolone (IVMP) for disabling MS relapses, so that a clear policy decision can be made: hospital or community? Whilst it is likely that home administration of IVMP may be more suitable from the patients’ perspective, a randomised controlled trial (RCT) is required to compare the health care experiences in these settings
This pool of items was administered by postal survey to 160 people with relapsing-remitting MS, and standard psychometric techniques were used to develop a rating scale
Summary
Intravenous steroids are routinely used to treat disabling relapses in multiple sclerosis (MS). Whilst it is likely that home administration of IVMP may be more suitable from the patients’ perspective, a randomised controlled trial (RCT) is required to compare the health care experiences in these settings. To do this an explicit and valid outcome measure to quantify patients’ experiences of relapse management is needed as the primary outcome. This is probably because “satisfaction” is an ill-defined term It is more useful clinically, to refine the measurement of patients’ experiences by quantifying the main aspects of relapse management that people with MS find important. This article reports the development of a rating scale measuring the essential aspects of patients’ experiences in MS relapse management, to be used in a trial of delivery of IV steroids
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