Centres for People with Intellectual Disabilities: Attendees' Perceptions of Benefit.

BACKGROUND: Day and community learning centres aim to provide intellectually disabled (ID) people with social support, life skills and greater control over their lives. However, there is little research exploring the benefits of attendance from the perspective of attendees and whether these goals are met. MATERIALS AND METHODS: Unstructured interviews were held with four female and three male participants with a mild level of disability, from an East Midlands Mencap facility. Interviews were transcribed and analysed through the Grounded Theory approach. RESULTS: Themes of social support, life skills, control and self-image emerged from the transcripts. This brief report focuses on issues of self-image and internal control of behaviour and emotion, as these constructs have received less attention within existing literature. CONCLUSIONS: Learning centres provide important psychological benefits for people with learning difficulties. These are often less accessible to evaluation, but are nonetheless key outcomes from the perspective of attendees.

The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the dependence in AD in England 2 longitudinal study.

OBJECTIVE: The relationship between conventional indicators of Alzheimer's disease (AD) progression and quality of life (QoL) outcomes is unclear. Dependence on others has been recommended as a unifying construct in defining AD severity. This study examined the relationship between indicators of disease severity (including dependence) and changes in QoL and utility over 18 months. METHODS: A multi-centre, cohort study was conducted across 18 UK sites. One hundred and forty-five patients with possible/probable AD and their caregivers completed assessments of disease severity (Dependence Scale, Mini-mental state examination, Neuropsychiatric Inventory, Disability Assessment for Dementia), dementia-specific QoL (DEMQOL, DEMQOL-Proxy) and generic health-related utility (EQ-5D) at both time points. RESULTS: There was evidence of individual change in QoL over 18 months, with over 50% of patients reporting either maintenance or improvement of life quality. The EQ-5D proxy suggested a mean decline in QoL, whereas the DEMQOL-Proxy indicated overall improvement. In the subsample of people who self-reported QoL and utility, no mean change was evident. Changes in dependence did not explain changes on any QoL or utility outcome. There was a weak association between the EQ-5D proxy and changes in cognition, whereas changes on the DEMQOL-Proxy were partly explained by changes in behavioural disturbance. CONCLUSIONS: The natural progression of AD over 18 months does not lead to inevitable decline in QoL or utility. There are no clear or consistent direct relationships between changes in disease severity and QoL outcomes. The impact of increasing dependence and worsening disease severity is likely buffered by a combination of psychological, social and environmental factors.

Dependence in Alzheimer's disease and service use costs, quality of life, and caregiver burden: the DADE study.

BACKGROUND: Most models determining how patient and caregiver characteristics and costs change with Alzheimer's disease (AD) progression focus on one aspect, for example, cognition. AD is inadequately defined by a single domain; tracking progression by focusing on a single aspect may mean other important aspects are insufficiently addressed. Dependence has been proposed as a better marker for following disease progression. METHODS: This was a cross-sectional observational study (18 UK sites). Two hundred forty-nine community or institutionalized patients, with possible/probable AD, Mini-Mental State Examination (3-26), and a knowledgeable informant participated. RESULTS: Significant associations noted between dependence (Dependence Scale [DS]) and clinical measures of severity (cognition, function, and behavior). Bivariate and multivariate models demonstrated significant associations between DS and service use cost, patient quality of life, and caregiver perceived burden. CONCLUSION: The construct of dependence may help to translate the combined impact of changes in cognition, function, and behavior into a more readily interpretable form. The DS is useful for assessing patients with AD in clinical trials/research.

What Measures are Effective in Trauma Screening for Young Males in Custody? A COSMIN Systematic Review.

Despite the available evidence identifying the high prevalence rates of potentially traumatic experiences in forensic populations, there is still a lack of evidence supporting the use of suitable assessment tools, especially for young males in custody. For services to identify, support, and offer trauma interventions to this cohort, practitioners require reliable and valid assessment tools. This systematic review (Open Science Framework registration: https://osf.io/r6hbk) identifies those tools able to provide valid, reliable, and comparable data for this cohort. Five electronic databases and gray literature were searched to identify relevant measures. Inclusion criteria: studies of tools to assess for trauma with males aged between 12 and 25 years-old in a custodial setting, any year of publication, and available in English. Exclusion criteria: studies that did not measure psychological trauma or include a standalone trauma scale, or report primary data. A three-step quality assessment method was used to evaluate the methodological quality and psychometric properties of the measures. Fourteen studies were selected for review (which included 12 measures). The studies sampled a total of approximately 1,768 male participants and an age range of 12 to 25 years. The studies reported on various types of psychometric evidence and due to the lack of homogeneity, a narrative synthesis was used to discuss, interpret, and evaluate each measure. The overall quality of the psychometric properties of the measures in this review showed that the currently available instruments for the assessment of trauma with young males in custody is limited but promising.

Self-reported quality of life ratings of people with dementia: the role of attitudes to aging.

BACKGROUND: Attitudes to aging have not previously been assessed in people with dementia. The possession of positive life attitudes into older age has the potential to induce resilience to health changes and may explain the discrepancy between self-reported and proxy ratings of quality of life (QoL). The aim of this study was to explore the attitudes of people with dementia to determine the main factors that predict these attitudes and any relationship that exists with self-reported QoL. METHODS: Fifty-six participants with dementia were recruited from a memory clinic setting. The Bath Assessment of Subjective Quality of Life in Dementia, Attitudes to Aging Questionnaire (AAQ), Memory Functioning Scale, Alzheimer's Disease Cooperative Study Activities of Daily Living Inventory, and Mini-Mental State Examination were administered. The AAQ was also completed by 86 community-dwelling older adults without dementia. RESULTS: Participants with dementia displayed a significantly stronger endorsement of the negative attitude that aging is a time of psychosocial loss than those without dementia. Regression analyses suggest this negative attitude acts as a partial mediator in the relationship between the person's level of insight and self-reported QoL. CONCLUSIONS: Negative attitudes to aging had a direct impact on the self-reported QoL ratings of people with dementia. The view of aging as a time of psychosocial loss was most significant for people with dementia and suggests that negative stereotypes of dementia need to be challenged. In order to promote QoL, care should focus on abilities that the person retains rather than what has been lost.

Predictors of quality of life ratings from persons with dementia: the role of insight.

OBJECTIVE: Evidence suggests that people with dementia are able to respond accurately and consistently to questions about quality of life (QoL), although large discrepancies exist between patient and proxy ratings. This may be due, in part, to the reduced insight of the person with dementia. The aim of this study was to explore the predictors of QoL ratings in a sample of people with mild dementia, with a particular focus on the role of insight. METHODS: Sixty-nine participants and their caregivers were recruited from a memory clinic setting. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID), Alzheimer's Disease-Related Quality of Life Scale, Memory Functioning Scale, Alzheimer's Disease Cooperative Study Activities of Daily Living (ADL) Inventory and Mini Mental State Examination were administered. RESULTS: Regression analyses indicated that the strongest predictor of QoL ratings from persons with dementia was their awareness of memory function, such that lower awareness was associated with higher QoL ratings. Proxy ratings of activity performance and enjoyment of activity were also significant predictors of BASQID scores. CONCLUSIONS: Awareness of memory function impacts directly on patient QoL ratings and can also mask the effects of changes in other outcomes such as ADL function. Measures of awareness should therefore be employed alongside patient QoL ratings in order to ensure they are interpreted accurately. Discrepancies between patient and proxy QoL ratings do not necessarily occur because of patient unreliability, but may instead reflect the application of distinct modes of QoL assessment that emphasise very different outcomes.

Can people with mild to moderate dementia provide reliable answers about their quality of life?

BACKGROUND: Cognitive limitations and lack of insight have been seen as barriers to self-reporting in quality of life (QoL) assessment of people with dementia. However growing evidence suggests that people with mild to moderate dementia may be able to complete standardised questionnaire items and articulate feelings, providing reliable evaluations of their health and QoL. OBJECTIVE: To examine the reliability of the item pool of a new measure of self-reported QoL, the Bath Assessment of Subjective Quality of Life in Dementia (BASQID). SUBJECTS: Sixty people with mild to moderate dementia, recruited from a memory clinic. METHODS: Participants completed 44 items from an initial draft of the BASQID and 30 completed the items on a second occasion, 2 weeks later. Item analytic criteria, including item facility, score distributions, tests of internal consistency and reproducibility, were used to reduce the item pool, and the reliability of the reduced pool was examined. RESULTS: Twenty items were removed from the item pool. All retained items had at least moderate test-retest reliability (kappa >0.41), with 13 items displaying good to very good reliability (kappa >0.61). These 24 items were internally consistent (alpha = 0.91), and the total score had a good 2-week test-retest reliability with an intraclass correlation coefficient of 0.82 (0.66-0.91). CONCLUSIONS: Participants were able to complete items relating to feelings and evaluations of a range of QoL domains. The consistency of responses over a 2-week period suggests that self-reported QoL assessments are feasible and appropriate for people with mild to moderate dementia.

How can we best assess the quality of life of people with dementia? the Bath Assessment of Subjective Quality of Life in Dementia (BASQID).

PURPOSE: The study aim was to develop a measure of self-reported quality of life (QoL) for people with mild to moderate dementia based on their views-the Bath Assessment of Subjective Quality of Life in Dementia (BASQID). DESIGN AND METHODS: We developed the measure through multiple stages. Two field tests of the measure (ns = 60 and 150) enrolled people with dementia from a memory clinic, and we used the data to analyze the psychometric properties of the scale. Nested within this was a longitudinal investigation of 36 Alzheimer's disease patients prescribed with acetylcholinesterase inhibitors. RESULTS: The BASQID contains 14 items assessing a range of QoL issues. Results showed that the BASQID satisfies the criteria of a valid, reliable, and acceptable assessment of subjective QoL. Scores were responsive to changes in QoL over 3 months. Low association between the BASQID and the Mini-Mental State Examination indicates that cognitive function may influence QoL but is an indirect measure of the QoL experienced during dementia. IMPLICATIONS: The BASQID provides a means of better understanding the experiences, perceptions, and beliefs of people with dementia. It does this through acknowledgement of the many influences on QoL over and above health status. Practitioners and researchers can use the BASQID alongside objective assessments of dementia to obtain a complete appraisal of a person's QoL.

Improving the psychological evaluation of exercise referral: Psychometric properties of the Exercise Referral Quality of Life Scale.

There is a growing need to assess the psychological outcomes of exercise referral and the National Institute of Health and Care Excellence has called for the routine assessment of life-quality. However, a quality of life scale specific to the requirements of exercise referral is currently unavailable. Therefore, the aim of this study was to produce a quality of life measure for this purpose. The Exercise Referral Quality of Life Scale is a 22-item measure comprising three domains: mental and physical health, injury pain and illness and physical activity facilitators. Exploratory factor analysis determined the initial factor structure and was subsequently confirmed by confirmatory factor analysis. Additional scale properties were also assessed. The scale contributes to the global need for improved consistent psychological outcome assessment of exercise referral.

Living with type 1 diabetes: a by-person qualitative exploration.

Type 1 diabetes is a chronic condition which places enormous demands on the individual diabetic. A strict care routine is necessitated, yet even the most controlled and disciplined diabetic is likely to experience associated health problems and automatically faces a reduced life expectancy. The current study explores the psychological repercussions of this situation via a small scale qualitative study which focuses on the very different viewpoints and experiences of four adults living with Type 1 diabetes. A new and original form of by-person (or by-case) qualitative analysis is employed in order to capture, in a rich and holistic fashion, each participant's current relationship with their condition, their experience of living and dealing with diabetes and the ways in which diabetes is integrated within their lives and identities. The findings have implications for, and are discussed in relation to, issues of control, regimen adherence, and what it means to be a 'good' or 'successful' diabetic. The conclusion is drawn that the satisfaction of personal goals and a focus on psychological as well as physical health may be very important if positive quality of life outcomes are to be attained in the context of Type 1 diabetes.

The validation of the Subjective Index of Physical and Social Outcome (SIPSO).

OBJECTIVE: To validate the Subjective Index of Physical and Social Outcome (SIPSO) in its final 10-item version as a measure of reintegration to pre-stroke lifestyle. DESIGN: Postal and interview administration of questionnaires. MEASURES: SIPSO, Functional Limitations Profile (FLP), Reintegration to Normal Living Index (RNLI). SETTING: Community setting, Bath, UK. SUBJECTS: Two hundred and sixty-one survivors of stroke discharged from a district general hospital. RESULTS: Internal consistency (item-total correlations >0.6) and test-retest reliability (intraclass correlation coefficient (ICC) = 0.96) of the measure were confirmed. Construct validity was confirmed through significant correlations with the six subsections of the FLP and the RNLI. Confirmatory factor analysis of the measure found that the first five items form a robust subscale that clearly relates to physical function. The items within the second subscale (questions 6-10) measure several domains (social, leisure, self-image) and do not form a homogeneous group. The SIPSO was able to detect an improvement in integration within a sample of patients over a three-month period soon after discharge (effect size = 0.26). The hypothesis that the degree of improvement experienced by patients following discharge from hospital would be small, but should be detectable was confirmed. The agreement between proxy and patient on the SIPSO was acceptable for individual items (kappa value range = 3.1-5.8) and total score (ICC = 0.96). CONCLUSIONS: The SIPSO is a brief self-complete measure, with proven validity and reliability, which addresses both quantitative and qualitative aspects of activities and interaction. It provides a useful measure for evaluating rehabilitation programmes that aim to reintegrate patients to their pre-stroke lifestyle. The authors suggest that the SIPSO should be used as a 10-item measure.