Afsane Riazi

Measuring the impact of MS on walking ability The 12-Item MS Walking Scale (MSWS-12)

Objective: To develop a patient-based measure of walking ability in MS. Methods: Twelve items describing the impact of MS on walking (12-Item MS Walking Scale [MSWS-12]) were generated from 30 patient interviews, expert opinion, and literature review. Preliminary psychometric evaluation (data quality, scaling assumptions, acceptability, reliability, validity) was undertaken in the data generated by 602 people from the MS Society membership database. Further psychometric evaluation (including comprehensive validity assessment, responsiveness, and relative efficiency) was conducted in two hospital-based samples: people with primary progressive MS (PPMS; n = 78) and people with relapses admitted for IV steroid treatment (n = 54). Results: In all samples, missing data were low (≤3.8%), item test–retest reproducibility was high (≥0.78), scaling assumptions were satisfied, and reliability was high (≥0.94). Correlations between the MSWS-12 and other scales were consistent with a priori hypotheses. The MSWS-12 (relative efficiency = 1.0) was more responsive than the Functional Assessment of Multiple Sclerosis mobility scale (0.72), the 36-Item Short Form Health Survey physical functioning scale (0.33), the Expanded Disability Status Scale (0.03), the 25-ft Timed Walk Test (0.44), and Guy’s Neurologic Disability Scale lower limb disability item (0.10). Conclusions: The MSWS-12 satisfies standard criteria as a reliable and valid patient-based measure of the impact of MS on walking. In these samples, the MSWS-12 was more responsive than other walking-based scales.

Self-efficacy and self-management after stroke: a systematic review.

Purpose. The purpose of this review is to examine (1) the influence of self-efficacy on rehabilitation outcomes post-stroke, and (2) the evidence to support self-management interventions based on self-efficacy principals for stroke survivors. Method. Medline, Embase, Psychlit, Web of Science, AMED and Cochrane Databases for systematic reviews databases were searched for relevant articles in English between 2000 and ending in July 2009. Articles included (1) primary research testing relationships between self-efficacy and rehabilitation outcomes including the measuring impairment and activity or participation in a stroke population, and (2) research testing efficacy and effectiveness of self-management interventions designed specifically for a stoke population in which the principle theoretical framework is self-efficacy or a similar control cognition. Methodological quality appraisal and data extraction was carried out by two reviewers. Results. Of the 104 articles that were identified by the search, 22 met the criteria to be included in the review. There is evidence that self-efficacy is an important variable associated with various outcomes post-stroke. These outcomes include quality of life or perceived health status, depression, ADL and, to a certain extent, physical functioning. Further empirical evidence is needed to extend these findings, and to determine whether self-efficacy has additional predictive value over and beyond the objective measures of impairment. There is also emerging evidence of benefits to be gained from programmes that target self-management based on self-efficacy principles; however, the optimal format of delivering these interventions for stroke survivors is not clear. Conclusions. There is a need for researchers, to work together with other stakeholders to develop and test interventions that can support self-management skills and confidence to make continued progress after stroke. This could help to reduce some of the negative consequences of stroke such as reduced quality of life and social isolation.

Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples

Background and aim: The psychometric properties of rating scales are sample dependent and need evaluations in different samples. The Multiple Sclerosis Impact Scale (MSIS-29), a new patient based rating scale for multiple sclerosis (MS) was predominantly developed from a community based sample derived from the MS Society. A number of important patient characteristics of this sample remain unknown. The aim of the study was to evaluate five psychometric properties of the MSIS-29 in three hospital based samples: people admitted for rehabilitation, people admitted for intravenous corticosteroid treatment for MS relapses, and people with primary progressive MS. Methods: People with MS were recruited from the three clinical settings. They completed several health measures. MSIS-29 data were evaluated for data quality, scaling assumptions, acceptability, reliability and validity, and compared with those from a previously reported community based study. Results: A total of 233 people (rehabilitation =53; corticosteroids =76; primary progressive =104) completed questionnaires. In all samples, missing data were low (≤2.2%), scaling assumptions were satisfied, and reliability was high (≥0.91). Correlations between the MSIS-29 and other scales were consistent with a priori hypotheses. Findings were consistent with those from the community samples. Conclusions: The psychometric properties of the MSIS-29 are consistent across three hospital based samples, and similar to those in the community samples. These findings further support its use as an outcome measure in different clinical settings.

How responsive is the Multiple Sclerosis Impact Scale (MSIS-29)? A comparison with some other self report scales

Objectives: To compare the responsiveness of the Multiple Sclerosis Impact Scale (MSIS-29) with other self report scales in three multiple sclerosis (MS) samples using a range of methods. To estimate the impact on clinical trials of differing scale responsiveness. Methods: We studied three discrete MS samples: consecutive admissions for rehabilitation; consecutive admissions for steroid treatment of relapses; and a cohort with primary progressive MS (PPMS). All patients completed four scales at two time points: MSIS-29; Short Form 36 (SF-36); Functional Assessment of MS (FAMS); and General Health Questionnaire (GHQ-12). We determined: (1) the responsiveness of each scale in each sample (effect sizes): (2) the relative responsiveness of competing scales within each sample (relative efficiency): (3) the differential responsiveness of competing scales across the three samples (relative precision); and (4) the implications for clinical trials (samples size estimates scales to produce the same effect size). Results: We studied 245 people (64 rehabilitation; 77 steroids; 104 PPMS). The most responsive physical and psychological scales in both rehabilitation and steroids samples were the MSIS-29 physical scale and the GHQ-12. However, the relative ability of different scales to detect change in the two samples was variable. Differing responsiveness implied more than a twofold impact on sample size estimates. Conclusions: The MSIS-29 was the most responsive physical and second most responsive psychological scale. Scale responsiveness differs notably within and across samples, which affects sample size calculations. Results of clinical trials are scale dependent.

Using the SF-36 measure to compare the health impact of multiple sclerosis and Parkinson’s disease with normal population health profiles

Objective: To examine the relative impact of two chronic neurological disorders, multiple sclerosis and Parkinson’s disease, by comparing patients’ scores on the medical outcomes study 36-item short form health survey (SF-36) with the health profile of the United Kingdom population norms. Methods: 638 people representing the full spectrum of multiple sclerosis and 227 patients with Parkinson’s disease were studied. Health status was measured by the SF-36. Scores for the eight health domains were compared after controlling for age, sex, disease duration, mobility, social class, ethnicity, education, marital status, and employment status. Results: People with multiple sclerosis and those with Parkinson’s disease had significantly worse health than the general population on all eight domains measured by the SF-36. The relative impact of multiple sclerosis and Parkinson’s disease were similar, but multiple sclerosis resulted in poorer scores on physical functioning and better scores in mental health. People with mild multiple sclerosis who walked without an aid also had significantly worse scores in all dimensions than the general UK population. Conclusions: The results highlight the need for further research into aspects of health measured by the SF-36. Nevertheless, generic measures that are applicable across multiple diseases may fail to address clinically important aspects of the impact of specific disorders.

Self-efficacy predicts self-reported health status in multiple sclerosis

Self-efficacy is a belief that one can competently cope with a challenging situation. If self-efficacy is a strong predicto r of health status in multiple sclerosis (MS), it may be an important area to target in clinical practice, as such beliefs may be modifiable. The aim of this study was to examine the predictive value of self-efficacy on self-reported health status in MS. Eighty-nine people with MS completed the Multiple Sclerosis Self-efficacy Scale (MSSE function and control scales), the Multiple Sclerosis Impact Scale (MSIS-29), and the Multiple Sclerosis Walking Scale (MSWS-12) at two time points: 1) admission to an inpatient rehabilitation unit (n=43) or for steroid treatment for relapses (n=46); and 2) discharge (rehabilitation group) or six weeks later (steroid group). Multiple regression analyses examined whether baseline and changes in self-efficacy predict changes in self-reported health status. Both baseline and changes in self-efficacy were strong and independent predictors of changes in health status (P-values ranged from 0.025 to B-0.001). That is, pretreatment self-efficacy scores and increases in self-efficacy scores from baseline to follow-up (improvement), were significantly associated with decreases (improvement) in perceived walking ability and physical and psychological impact of MS. The findings suggest that self-efficacy predicts improvement in health status and that self-efficacy would be an important domain to measure and manage actively in education and rehabilitation programs.

Evidence-based measurement in multiple sclerosis: the psychometric properties of the physical and psychological dimensions of three quality of life rating scales

The selection of measures of quality of life used in clinical trials of multiple sclerosis (MS) should be evidence-based. Head-to -head comparison of measures facilitates the selection of measures. The aim of the study was to compare the psychometric properties of the physical and psychological dimensions in three measures of quality of life to aid choice of the most appropriate scale for use in clinical trials of MS. O ne hundred and twenty-one people with MS (rehabilitation =57; steroids =64) completed a selection of health measures before and after treatment. The psychometric properties of three measures of physical function (MSIS-29 physical, SF-36 physical functioning, FA MS mobility) and three measures of psychological function (MSIS-29 psychological, SF-36 mental health, FA MS emotional well-being) were compared by examining data quality, scaling assumptions, acceptability, reliability, validity and responsiveness. Physical (0.63- 0.71) and psychological (0.70-0.75) scales were substantially correlated indicating they measure related constructs. The MSIS-29 physical and psychological scales satisfied all criteria for internal consistency reliability (physical =0.91; psychological =0.89) and validity. The SF-36 physical scale had a notable floor effect (20%). The FA MS mobility scale had lower reliability (a=0.78) compared to other measures. The MSIS-29 physical (effect size=0.91) and psychological (effect size =0.62) scales were the most responsive. In these three samples, the MSIS-29 had better measurement properties for combined physical and psychological health than the SF-36 and the FA MS.

Vocational rehabilitation services for people with multiple sclerosis : what patients want from clinicians and employers

Background The NSF for Long-term Neurological Conditions highlights the need for vocational rehabilitation services. Although the barriers to work for people with MS (pwMS) have been clearly identified, there has been little research that identifies the type of support required. Objective To identify what pwMS require from a vocational rehabilitation service in terms of content and service delivery. Design of study Four focus groups of pwMS, currently in employment, were convened. These were audio-taped and content analysed using a constant comparison method. Results People with MS identified two key needs; managing performance and managing expectations. Performance difficulties could be managed either by treating symptoms, by changing the environment, or by altering the demands of the job. PwMS highlighted the need for counselling to help them, and advocacy to help their employers have appropriate expectations. Conclusion PwMS need support in the workplace in two distinct ways. First, by managing the interaction between the impairments caused by MS, the physical environment, and the demands imposed by the work. Second, by providing expert knowledge about the employment environment and the needs of employers, an awareness of the relevant legislation and counselling in supporting people to adapt, adjust and resolve complex issues. Multiple Sclerosis 2007; 13: 1183—1189. http://msj.sagepub.com

Predictors of psychological well-being in Types 1 and 2 diabetes

Abstract Psychological well-being and individuals representations of their illness were assessed for 96 patients with Type 1 diabetes and 139 patients with Type 2 diabetes who attended a hospital diabetic clinic for an annual check-up. Metabolic control (HbAlc) and the presence of diabetic complications (retinopathy, neuropathy, hypertension and nephropathy) were also recorded. Type 2 patients, as expected, tended to be older and be experiencing more complications than Type 1 patients. Consistent with previous findings, women reported lower well-being than men. Type 1 and Type 2 patients did not differ in terms of well-being, but the predictors of well-being were somewhat different in the two groups. In both groups, well-being was related to control beliefs (confidence in self-management and ability to delay complications) and to lower ratings of the extent to which diabetes interfered with everyday activities. For Type 1 patients only, well-being also related to a tendency to perceive their diabetes as having minimal impact on their lives. Metabolic control showed no consistent relationship with psychological variables, but the number of complications significantly predicted lower well-being among Type 2 patients only. It is argued that well-being is a function both of illness representations and the actual experience of complications, which are more prevalent among those with Type 2 than Type 1 diabetes.

Self-management after stroke: time for some more questions?

Purpose: To discuss current research and issues which contribute towards the debate on the direction of self-management programmes for individuals after stroke and make recommendations for future research. Method: This paper includes a critical discussion on self-management specifically applied to stroke. The findings are positioned in the context of the wider stroke literature and debates on the suitability of different programmes. Results: Three main areas of concern and potential opportunities were identified which contribute to the debate on self-management; the “individual stroke survivor”; “professional models and practice” and “organizational context”. Conclusion: The body of literature on self-management programmes for people with stroke is relatively new and although research is building many issues are unknown. We have highlighted a number of potential areas of inquiry and concern. In order to further advance the research on stroke and self-management we believe a convergence of the evidence base for chronic disease self-management programmes and research which has illuminated the specific challenges and barriers of living with stroke is warranted. There is also a need to avoid the potential consequence of focusing on a “one-size” programme but rather develop interventions which can be inclusive of social aspects of self-management, and identify new methods of delivery. Implications for Rehabilitation Stroke is a common cause of long-term disability in the developed world Self-management programmes designed specifically for people with stroke are rare but research is emerging Ongoing research focusing on behaviour change should acknowledge individual needs, professional beliefs and values, as well as the organizational context post-stroke