Problem-Solving Treatment for People Recently Diagnosed with Visual Impairment: Pilot Randomised Controlled Trial.

BACKGROUND: Problem-Solving Treatment (PST) has been used to treat and prevent depression in a variety of settings. However, the impact of PST on improving psychological well-being in those with recent vision loss remains unknown. The aim of this study was to evaluate whether PST may lead to better psychological well-being in people with recent vision loss through a pilot parallel-group randomised controlled trial. METHODS: Participants who were diagnosed with visual impairment during the previous 3 months were randomly allocated to either an 8-week PST or treatment as usual (N = 61). Outcome measures were administered at baseline, 3, 6, and 9-months. RESULTS: A linear mixed model demonstrated that PST significantly improved psychological well-being (measured by the Warwick Edinburgh Mental Well-being Scale) (treatment effect = 2.44; 95% CI = 0.40-4.47; p = 0.019). Significant improvements in the PST group for symptoms of distress, quality of life and self-efficacy were also observed. There was no significant difference in mobility. The treatment effect was consistent at all follow-ups. Attrition rate was low (13%). CONCLUSIONS: PST was associated with a significant and sustained improvement in a range of outcomes in people with recent vision loss. Further large scale RCT is now required.

Experiences of Barriers to Self-Compassion in Women Experiencing Weight Difficulties: An Interpretative Phenomenological Analysis.

There is currently little understanding of why some individuals find it difficult to engage in self-compassion (SC), defined as a form of self-kindness, self-acceptance, and courage to face one's distress. This is especially true for women experiencing weight difficulties, despite the emergence of promising results from compassion-focused approaches to weight management. Consequently, this study undertakes a qualitative study to explore the experiences of barriers to self-compassion in women who were actively trying to manage their weight, using interpretative phenomenological analysis (IPA). A qualitative study was employed using an interpretive approach. Using purposive sampling, 10 women were recruited from London-based weight loss groups. Three super-ordinate themes emerged: (I) feeling unable to prioritise own needs over others' needs; (II) having to learn and sustain a new approach to weight loss; and (III) having very high standards. The emergent themes suggest that women who face weight difficulties have numerous barriers to self-compassion. To fully utilise compassionate-based weight loss interventions for women, it is important to recognise these barriers and implement strategies to lessen their impact.

Exploring the Experiences of Women Who Develop Restrictive Eating Behaviours After Bariatric Surgery.

OBJECTIVE: This study aimed to explore the experiences of women who had developed excessively restrictive eating behaviours following bariatric surgery. METHOD: Five female participants, who were at least nine months post-bariatric surgery and exhibiting restrictive eating behaviours, were recruited from Bariatric Surgery Psychology Services and asked to complete qualitative face-to-face semi-structured interviews. The data was analysed using interpretative phenomenological analysis (IPA). RESULTS: Three super-ordinate themes emerged: (1) experiences of weight stigma and weight history on self, (2) the impact of loose skin, (3) thoughts about food and disordered eating patterns. These captured the impact of past weight-related experiences-including weight stigma, intense fears of weight gain, negative cognitions about the self, the impact of excess skin, changes in the way the women thought about food and restrictive eating behaviours. DISCUSSION: This study is one of the first to specifically explore restrictive eating disorders after bariatric surgery using a qualitative approach. The findings of this study may offer helpful aspects for professionals to hold in mind when identifying individuals with problematic restrictive eating behaviours following bariatric surgery. Body contouring surgery, internalised weight bias and weight stigma are explored in relation to the post-bariatric surgery treatment pathway. The current diagnostic criterion for anorexia nervosa are discussed to highlight difficulties in diagnosing this presentation in the post-bariatric surgery population, where people can have BMIs over 25 kg/m2 but are severely restricting energy intake.

"Neither a wife nor a widow": an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness.

Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants' accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.

The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies.

OBJECTIVE: Systematic review of the nature, frequency and severity of psychological experiences of people who have a close relationship with a person with a prolonged disorder of consciousness. DATA SOURCES: Cochrane Library, Web of Science, PsycINFO, PubMed, Embase®, MEDLINE®, Allied and Complementary Medicine™, were searched from inceptions until December 2016 with additional hand searching of reference lists of included articles. REVIEW METHODS: Studies were included that used quantitative methodologies and psychological measures to investigate experiences. The PRISMA statement was followed with inclusion criteria set a priori. A data synthesis summarized psychological constructs studied. RESULTS: A total of 18 studies (ranging between n = 16-487 participants) met the inclusion criteria with 15 of 18 studies focused on the primary caregiver. A total of 23 standardized psychological measures were identified to assess four primary psychological constructs: Loss and grief, psychological wellbeing changes, burden and use of coping strategies. CONCLUSIONS: Small sample sizes, limited variables and reliance on observational methods affected quality. Caregivers do find ways to manage independently, but some exhibit clinically significant psychological distress that does not change over time alone and may get worse.

How is rehabilitation with and without an integrated self-management approach perceived by UK community-dwelling stroke survivors? A qualitative process evaluation to explore implementation and contextual variations.

OBJECTIVE: Self-management programmes could support long-term needs after stroke and using methods integrated into rehabilitation is one option. To explore theoretical assumptions and possible mechanisms of implementation a process evaluation was delivered alongside a cluster trial which has demonstrated feasibility of an integrated self-management programme (Bridges SMP) in community-dwelling stroke survivors. This paper aims to show the extent to which experiences from stroke survivors receiving rehabilitation in control (usual care) and intervention (integrated self-management) sites reflected the differences in rehabilitation received and whether their understandings aligned with the self-management approach employed. DESIGN: Semistructured qualitative interviews carried out as part of a process evaluation analysed thematically. SETTING: Study was based in South London; all interviews were carried out in participants' home setting. PARTICIPANTS: 22 stroke participants recruited; 12 from integrated self-management sites and 10 from usual care sites. RESULTS: All participants revealed shared appreciation of knowledge and support from therapists but subtle differences emerged between sites in respect to perceptions about responsibility, control and how previous experiences were used. Accounts depicted a variance regarding who had structured and planned their rehabilitation, with greater flexibility about content and involvement perceived by participants from the integrated self-management sites. They also provided accounts and experiences which aligned with principles of the intervention, such as self-discovery and problem-solving. CONCLUSIONS: The findings reflect our theoretical assumptions and possible mechanisms of implementation that rehabilitation with a focus on supporting self-management is reflected in accounts and understandings of stroke survivors. Taken together with our previous research this justifies evaluating the effectiveness of Bridges SMP in a larger sample to further contribute to an understanding of the functioning of the intervention, implementation, contextual factors and mechanisms of impact. TRIAL REGISTRATION NUMBER: ISRCTN42534180; Post-results.

The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis: views of patients and health professionals.

PURPOSE: The majority of people with multiple sclerosis (pwMS) initially present with discreet periods of relapses followed by partial remission of symptoms (RRMS). Over time, most pwMS transition to secondary progressive MS (SPMS), characterized by a gradual accumulation of disability. This study aimed to explore the experiences, coping and needs associated with transitioning from RRMS to SPMS. METHOD: Data were collected via semi-structured interviews with nine pwMS and seven specialist MS health professionals (HPs). Thematic analysis was used to analyze the data. RESULTS: Four major themes were identified: "Is this really happening?"; "Becoming a reality"; "A life of struggle"; and "Brushing oneself off and moving on." Findings suggested a process of moving from uncertainty towards confirmation of one's diagnostic label. Being reclassified with SPMS served as a turning point for many, and was accompanied by a range of cognitive, emotional and behavioral responses. The value of adequate information and support surrounding the transition, and the potential benefit of education and support for health professionals in relation to the transition were indicated. CONCLUSIONS: Understanding pwMS' experiences of the transition is essential if clinicians are to provide pwMS with appropriate support during the transition. Implications for Rehabilitation The timing and delivery of preparatory education for patients about the transition to SPMS should be carefully considered. Sufficient information and follow-up support following the reclassification of SPMS is crucial but sometimes lacking. The importance of sensitive communication of the reclassification of SPMS was highlighted. MS Specialist health professionals may potentially benefit from training and support around communication of the reclassification of SPMS. Given the potential negative psychological impact of the transition, the psychological wellbeing of the patients during the transition to SPMS should be monitored and responded to appropriately.

The value of Tablets as reading aids for individuals with central visual field loss: an evaluation of eccentric reading with static and scrolling text.

PURPOSE: Technological devices such as smartphones and tablets are widely available and increasingly used as visual aids. This study evaluated the use of a novel app for tablets (MD_evReader) developed as a reading aid for individuals with a central field loss resulting from macular degeneration. The MD_evReader app scrolls text as single lines (similar to a news ticker) and is intended to enhance reading performance using the eccentric viewing technique by both reducing the demands on the eye movement system and minimising the deleterious effects of perceptual crowding. Reading performance with scrolling text was compared with reading static sentences, also presented on a tablet computer. METHODS: Twenty-six people with low vision (diagnosis of macular degeneration) read static or dynamic text (scrolled from right to left), presented as a single line at high contrast on a tablet device. Reading error rates and comprehension were recorded for both text formats, and the participant's subjective experience of reading with the app was assessed using a simple questionnaire. RESULTS: The average reading speed for static and dynamic text was not significantly different and equal to or greater than 85 words per minute. The comprehension scores for both text formats were also similar, equal to approximately 95% correct. However, reading error rates were significantly (p = 0.02) less for dynamic text than for static text. The participants' questionnaire ratings of their reading experience with the MD_evReader were highly positive and indicated a preference for reading with this app compared with their usual method. CONCLUSIONS: Our data show that reading performance with scrolling text is at least equal to that achieved with static text and in some respects (reading error rate) is better than static text. Bespoke apps informed by an understanding of the underlying sensorimotor processes involved in a cognitive task such as reading have excellent potential as aids for people with visual impairments.

Feasibility study of an integrated stroke self-management programme: a cluster-randomised controlled trial.

OBJECTIVES: To test the feasibility of conducting a controlled trial into the effectiveness of a self-management programme integrated into stroke rehabilitation. DESIGN: A feasibility cluster-randomised design was utilised with stroke rehabilitation teams as units of randomisation. SETTING: Community-based stroke rehabilitation teams in London. PARTICIPANTS: 78 patients with a diagnosis of stroke requiring community based rehabilitation. INTERVENTION: The intervention consisted of an individualised approach to self-management based on self-efficacy. Clinicians were trained to integrate defined self-management principles into scheduled rehabilitation sessions, supported by a patient-held workbook. MAIN OUTCOMES MEASURES: Patient measures of quality of life, mood, self-efficacy and functional capacity, and health and social care utilisation, were carried out by blinded assessors at baseline, 6 weeks and 12 weeks. Fidelity and acceptability of the delivery were evaluated by observation and interviews. RESULTS: 4 community stroke rehabilitation teams were recruited, and received a total of 317 stroke referrals over 14 months. Of these, 138 met trial eligibility criteria and 78 participants were finally recruited (56.5%). Demographic and baseline outcome measures were similar between intervention and control arms, with the exception of age. All outcome measures were feasible to use and clinical data at 12 weeks were completed for 66/78 participants (85%; 95% CI 75% to 92%). There was no significant difference in any of the outcomes between the arms of the trial, but measures of functional capacity and self-efficacy showed responsiveness to the intervention. Observation and interview data confirmed acceptability and fidelity of delivery according to predetermined criteria. Costs varied by site. CONCLUSIONS: It was feasible to integrate a stroke self-management programme into community rehabilitation, using key principles. Some data were lost to follow-up, but overall results support the need for conducting further research in this area and provide data to support the design of a definitive trial. TRIAL REGISTRATION NUMBER: ISRCTN42534180.

Measuring arm function early after stroke: is the DASH good enough?

OBJECTIVE: Despite a growing call to use patient-reported outcomes in clinical research, few are available for measuring upper limb function post-stroke. We examined the Disabilities of the Arm, Shoulder and Hand (DASH) to evaluate its measurement performance in acute stroke. In doing so, we compared results from traditional and modern psychometric methods. METHODS: 172 people with acute stroke completed the DASH. Those with upper limb impairments completed the DASH again at 6 weeks (n=99). Data (n=271) were analysed using two psychometric paradigms: traditional psychometric (Classical Test Theory, CTT) analyses examined data completeness, scaling assumptions, targeting, reliability and responsiveness; Rasch Measurement Theory (RMT) analyses examined scale-to-sample targeting, scale performance and person measurement. RESULTS: CTT analyses implied the DASH was psychometrically robust in this sample. Data completeness was high, criteria for scaling assumptions were satisfied (item-total correlations 0.55-0.95), targeting was good, internal consistency reliability was high (Cronbach's α=0.99) and responsiveness was clinically moderate (effect size=0.51). However, RMT analyses identified important limitations: scale-to-sample targeting was suboptimal, 4 items had disordered response category thresholds, 16 items exhibited misfit, 3 pairs of items had high residual correlations (>0.60) and 84 person fit residuals exceeded the recommended range. CONCLUSIONS: RMT methods identified limitations missed by CTT and indicate areas for improvement of the DASH as an upper limb measure for acute stroke. Findings, similar to those identified in multiple sclerosis, highlight the need for scales to have strong conceptual underpinnings, with their development and modification guided by sophisticated psychometric methods.

A predictive model for corticosteroid response in individual patients with MS relapses.

OBJECTIVES: To derive a simple predictive model to guide the use of corticosteroids in patients with relapsing remitting MS suffering an acute relapse. MATERIALS AND METHODS: We analysed individual patient randomised controlled trial data (n=98) using a binary logistic regression model based on age, gender, baseline disability scores [physician-observed: expanded disability status scale (EDSS) and patient reported: multiple sclerosis impact scale 29 (MSIS-29)], and the time intervals between symptom onset or referral and treatment. RESULTS: Based on two a priori selected cut-off points (improvement in EDSS ≥ 0.5 and ≥ 1.0), we found that variables which predicted better response to corticosteroids after 6 weeks were younger age and lower MSIS-29 physical score at the time of relapse (model fit 71.2% - 73.1%). CONCLUSIONS: This pilot study suggests two clinical variables which may predict the majority of the response to corticosteroid treatment in patients undergoing an MS relapse. The study is limited in being able to clearly distinguish factors associated with treatment response or spontaneous recovery and needs to be replicated in a larger prospective study.

Quality-of-life measures for use within care homes: a systematic review of their measurement properties.

OBJECTIVE: the aims of this review were (i) to identify quality-of-life (QoL) measures which have had their measurement properties validated in people residing in care homes or nursing homes, and to critically compare and summarise these instruments and (ii) to make recommendations for measurement instruments. METHODS: bibliographic databases PsycINFO, PubMed, Cochrane, CINAHL and Embase were searched for articles evaluating measurement properties of QoL instruments in people residing in care homes. Methodological quality of studies was assessed using the consensus-based standards for the selection of health measurement instruments checklist. Measurement properties of instruments were appraised using a systematic checklist. RESULTS: the search strategy resulted in 3252 unique citations, of which 15 articles were included in this review. These articles assessed 13 instruments, 8 of which were dementia or Alzheimer specific instruments. The QUALIDEM, a dementia-specific observational instrument, had the widest array of information available on its measurement properties, which were mostly satisfactory. Most measurement instruments lacked information on hypotheses testing and content validity. Information on responsiveness and measurement error was not available for any instrument. CONCLUSIONS: for people with dementia living in care homes, the QUALIDEM is recommended for measuring QoL. For residents without dementia, we recommend Kane et al.'s Psychosocial Quality of Life Domains questionnaire. Studies of higher methodological quality, assessing a wider range of measurement properties are needed to allow a more fully informed choice of QoL instrument.

A pilot randomised controlled trial of Problem-Solving Treatment for Visual Impairment (POSITIVE): protocol paper.

PURPOSE: For visually impaired individuals, motivation to be mobile and the individual's emotional states are predetermining factors of functioning. In addition, loss of confidence at the time of diagnosis could inhibit the ability to make progress. The aim of this study is to evaluate whether Problem-Solving Treatment, a brief, structured psychological intervention, leads to better psychological well-being in people who have been recently diagnosed as blind or partially sighted. METHODS: A pilot randomised controlled trial: the trial aims to recruit 120 individuals who have either: (1) been diagnosed with severe, irreversible sight loss, or (2) registered as blind or partially sighted within the last 3 months. Individuals will be randomly allocated to either the intervention or control group with randomisation stratified by severity of vision loss. Those in the intervention arm will receive Problem-Solving Treatment, an established intervention that addresses individual's confidence, motivation and psychological well-being by undertaking specific tasks to help individuals work through their problems, and recognising steps to problem resolution. Both groups will continue to receive routine care, such as mobility training. STUDY OUTCOMES: The primary outcome is psychological well-being measured at 3, 6, and 9 months after recruitment and assignment to intervention or control group. Secondary outcomes include symptoms of distress, mobility and quality of life.

Stroke Self-efficacy Questionnaire: a Rasch-refined measure of confidence post stroke.

OBJECTIVE: Measuring self-efficacy during rehabilitation provides an important insight into understanding recovery post stroke. A Rasch analysis of the Stroke Self-efficacy Questionnaire (SSEQ) was undertaken to establish its use as a clinically meaningful and scientifically rigorous measure. METHODS: One hundred and eighteen stroke patients completed the SSEQ with the help of an interviewer. Participants were recruited from local acute stroke units and community stroke rehabilitation teams. Data were analysed with confirmatory factor analysis conducted using AMOS and Rasch analysis conducted using RUMM2030 software. RESULTS: Confirmatory factor analysis and Rasch analyses demonstrated the presence of two separate scales that measure stroke survivors' self-efficacy with: i) self-management and ii) functional activities. Guided by Rasch analyses, the response categories of these two scales were collapsed from an 11-point to a 4-point scale. Modified scales met the expectations of the Rasch model. Items satisfied the Rasch requirements (overall and individual item fit, local response independence, differential item functioning, unidimensionality). Furthermore, the two subscales showed evidence of good construct validity. CONCLUSIONS: The new SSEQ has good psychometric properties and is a clinically useful assessment of self-efficacy after stroke. The scale measures stroke survivors' self-efficacy with self-management and activities as two unidimensional constructs. It is recommended for use in clinical and research interventions, and in evaluating stroke self-management interventions.

Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Staying at work and living with MS: a qualitative study of the impact of a vocational rehabilitation intervention.

OBJECTIVE: This study examines the impact of a patient designed occupational therapy led vocational rehabilitation (VR) intervention on the experiences of people with multiple sclerosis (MS) who were experiencing work instability. We used qualitative in-depth interviews to gain insight into participants' experiences of the intervention and identify the aspects that were most helpful from the participants' perspectives. DESIGN: We conducted interviews with 19 participants 2-8 weeks after the completion of their VR intervention. In these interviews, the participants were asked to describe the processes of the intervention and the influence of these on their work and MS. The interviews were transcribed verbatim and data analysis involved coding and the use of the constant comparative method to develop themes. RESULTS: We identified five major themes related to the impact of the intervention on "understanding my symptoms and their management in the workplace", "removing my anxieties", "understanding and influencing my employer", "managing my loss of confidence" and "having professional support". CONCLUSIONS: The VR intervention was valued by people with MS who felt that after the intervention they had a greater understanding of disease related, work related and personal factors that impacted on their ability to work and they were supported to manage these by a skilled professional. The themes identified in this study help gain insight into the participants' experience of the intervention and identify aspects that were most helpful from the participants' perspectives. This information could be used to inform further research and service development.

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.

Living well in care homes: a systematic review of qualitative studies.

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.

Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis.

PURPOSE: Care home residents with multiple sclerosis (MS) are more physically dependent than the average residents. However, little is known about their quality of life (QoL). We investigated the experiences of residents with MS using qualitative research methods and developed a conceptual model of QoL. METHODS: Twenty-one people with MS (age range 43-80 years) residing in a range of care homes were interviewed. The interviews were transcribed verbatim and analyzed using the constant comparative method. RESULTS: Four core model domains identified were as follows: (i) What the care home means to the residents, (ii) Self, (iii) Environment and (iv) Relationships. Some residents reported that care homes can relieve the burden on family, address specific environmental issues regarding safety and act as a form of social support. However, some reported isolation and difficulties adjusting to life in the care home. Having access to rehabilitation strengthened the feelings of independence within the care home. CONCLUSIONS: QoL is a broad, multidimensional construct for residents with MS. QoL measures for residents with MS should incorporate broad domains, including environmental factors. The conceptual model highlighted several areas for improving QoL of residents with MS, including more involvement of family members, encouraging independence by providing access to rehabilitation and providing support in the transition process.

A tool to measure the attributes of receiving IV therapy in a home versus hospital setting: the Multiple Sclerosis Relapse Management Scale (MSRMS).

BACKGROUND: Intravenous 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. METHODS: Scale 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. RESULTS: A 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. CONCLUSIONS: The 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.