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

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

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

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

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

A Predictive Model for Corticosteroid Response in Individual Patients with MS Relapses

<div><p>Objectives</p><p>To derive a simple predictive model to guide the use of corticosteroids in patients with relapsing remitting MS suffering an acute relapse.</p><p>Materials and Methods</p><p>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.</p><p>Results</p><p>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%).</p><p>Conclusions</p><p>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.</p></div

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&ndash;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