Changes in health policy have underlined the importance of evidence-based clinical practice and rigorous evaluation of patient-based outcomes. As patient-based outcome measurement is particularly important in treatment trials of multiple sclerosis, a number of disease-specific instruments have been developed recently. One limitation of these instruments is that none was developed using the standard psychometric approach of reducing a large item pool generated from people with multiple sclerosis. Consequently, an outcome measure for clinical trials of multiple sclerosis that is disease specific and combines patient perspective with rigorous psychometric methods will complement existing instruments. The aim of this study was to develop such a measure. Standard psychometric methods were used. A pool of 129 questionnaire items was generated from interviews with 30 people with multiple sclerosis, expert opinion and literature review. The questionnaire was administered by postal survey to 1530 people selected randomly from the Multiple Sclerosis Society membership database. Redundant items and those with limited measurement properties were removed. The remaining items (n = 41) were grouped into scales using factor analysis, and then refined to form the Multiple Sclerosis Impact Scale (MSIS-29), an instrument measuring the physical (20 items) and psychological (nine items) impact of multiple sclerosis. Five psychometric properties of the MSIS-29 (data quality, scaling assumptions, acceptability, reliability and validity) were examined in a separate postal survey of 1250 Multiple Sclerosis Society members. A preliminary responsiveness study of the MSIS-29 was undertaken in 55 people admitted for rehabilitation and intravenous steroid treatment of relapses. The MSIS-29 satisfied all psychometric criteria. Data quality was excellent, missing data were low (maximum 3.9%), item test–re-test reliability was high (r = 0.65–0.90) and scale scores could be generated for >98% of respondents. Item descriptive statistics, item convergent and discriminant validity, and factor analysis indicated that it was legitimate to generate scores for MSIS-29 scales by summing items. MSIS-29 scales showed good variability, small floor and ceiling effects, high internal consistency (Cronbach's alpha ≤0.91) and high test–re-test reliability (intraclass correlation ≤0.87). Correlations with other measures and the analysis of group differences provided evidence that the MSIS-29 measures the physical and psychological impact of multiple sclerosis. Effect sizes (physical scale = 0.82, psychological scale = 0.66) demonstrated preliminary evidence of good responsiveness. These results indicate the MSIS-29 is a clinically useful and scientifically sound patient-based outcome measure of the impact of multiple sclerosis suitable for clinical trials and epidemiological studies.

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.

Background: research in care home settings is often negatively focused, portraying life as sterile and devoid of meaningful experiences. Care homes have the potential to influence people's lives socially, physically and psychologically. It is important to understand what factors contribute to this. Objective: to conduct a systematic qualitative review of care home life and provide practical recommendations to enhance residents' quality of life. Methods: the following databases were searched: PsycINFO, Medline, Web of Science, EMBASE, Allied and Complementary Medicine Database and Cumulative Index to Nursing and Allied Health Literature. References from appropriate journals and individual articles were checked. Papers that fitted our selection criteria were selected. Two independent reviewers assessed methodological study quality. Thematic analysis and meta-ethnographic methods were adapted to synthesise findings. Results: thirty-one studies were identified. People in care homes voiced concerns about lack of autonomy and difficulty in forming appropriate relationships with others. Four key themes were identified: (i) acceptance and adaptation, (ii) connectedness with others, (iii) a homelike environment, (iv) caring practices. Conclusion: positive experiences in care homes can occur and are important for residents' quality of life. The review supports literature highlighting the need for relationship-centred approaches to care and emphasises the importance of understanding the resident's attitude towards living in care homes.

There is currently no consensus on a definition of participation that describes experiences and challenges of people with stroke. This meta-synthesis aimed to identify, appraise and synthesise qualitative research on stroke survivors' views of their experiences of social participation. Ten electronic databases were searched for relevant qualitative studies in English from January 2001 and ending September 2011. Searching was extended to grey literature, hand searching journals, checking references and contacting authors of included studies. Two independent reviewers extracted data and assessed methodological study quality. A meta-ethnographic approach described by Noblit and Hare was used to synthesise findings. Eleven articles met the inclusion criteria. Five main themes were identified: (1) change and disruption; (2) perceived magnitude of individual barriers; (3) pursuing personal choices; (4) building individual confidence and (5) evaluating personal meaning. The ability of the person to accept their stroke-related problems and adapt their behaviour and attitude by using active decision-making and self-management skills are central factors to social participation post stroke. This synthesis contributes an important addition to the conceptual understanding of social participation relevant to people with stroke within the UK. Implications for Rehabilitation Social participation post stroke appears to be a dynamic, complex and continuous individual process, and a personalised longer term approach to rehabilitation would be beneficial. Rehabilitation should be focussed on what is most meaningful to the person following their stroke. Professionals can do this by using questions which explore what stroke survivors want to do; what they perceive to be the significant barriers, and what skills and supportive networks are needed. Our findings emphasise the importance of rehabilitation practitioners supporting stroke survivors' to engage with meaningful self-selected social activities and the importance of stroke survivors having the freedom and autonomy to set their own goals within rehabilitation. The person's ability to adapt their behaviour and attitude by being positive, hopeful, determined, resilient and courageous is an essential part of pursuing their self-selected valued activities. Acknowledging and encouraging the importance of these behaviours and attitudes should be promoted in rehabilitation.

Spasticity is most commonly defined as an inappropriate, velocity dependent, increase in muscle tonic stretch reflexes, due to the amplified reactivity of motor segments to sensory input. It forms one component of the upper motor neuron syndrome and often leads to muscle stiffness and disability. Spasticity can, therefore, be measured through electrophysiological, biomechanical and clinical evaluation, the last most commonly using the Ashworth scale. None of these techniques incorporate the patient experience of spasticity, nor how it affects people's daily lives. Consequently, we set out to construct a rating scale to quantify the perspectives of the impact of spasticity on people with multiple sclerosis. Qualitative methods (in-depth patient interviews and focus groups, expert opinion and literature review) were used to develop a conceptual framework of spasticity impact, and to generate a pool of items with the potential to convert this framework into a rating scale with multiple dimensions. This item pool was administered, in the form of a questionnaire, to a sample of people with multiple sclerosis and spasticity. Guided by Rasch analysis, we constructed and validated a rating scale for each component of the conceptual framework. Decisions regarding item selection were based on the integration and assimilation of seven specific analyses including clinical meaning, ordering of thresholds, fit statistics and differential item functioning. The qualitative phase (17 patient interviews, 3 focus groups) generated 144 potential scale items and a conceptual model with eight components addressing symptoms (muscle stiffness, pain and discomfort and muscle spasms,), physical impact (activities of daily living, walking and body movements) and psychosocial impact (emotional health, social functioning). The first postal survey was sent to 272 people with multiple sclerosis and had a response rate of 88%. Findings supported the development of scales for each component but demonstrated that five item response options were too many. The 144-item questionnaire, reformatted with four-item response options, was administered with four validating instruments to an independent sample of 259 people with multiple sclerosis (response rate 78%). From the responses, an 88-item instrument with eight subscales was developed that satisfied criteria for reliable and valid measurement. Correlations with other measures were consistent with predictions. The 88-item Multiple Sclerosis Spasticity Scale (MSSS-88) is a reliable and valid, patient-based, interval-level measure of the impact of spasticity in multiple sclerosis. It has the potential to advance outcomes measurement in clinical trials and clinical practice, and provides a new perspective in the clinical evaluation of spasticity.

Health Technology Assessment Volume: 8, Issue: 9, Published in March 2004