Quality of life in autistic spectrum disorder

The limitations of using survival rates and symptom levels as the only outcome variables in clinical practice and research have become evident, particularly with people who have a lifelong and incurable disorder, such as Autistic Spectrum Disorder (ASD). For them, a more important consideration may be whether an intervention has the result of making life more of less 'worth living'. As such, quality of life (QOL) is increasingly seen as a key consideration in evaluating services, the ethical debate regarding health care resource allocation, when testing the effectiveness of new treatments and the development of clinical guidelines for these groups of people. However, factors contributing to QOL for people with ASD are not yet understood, and have to date received little attention by researchers. As such, there is currently no ASD-specific QOL assessment scale described in the literature. This thesis describes the development and validation of such a scale.The research presented here included 15 adults with a diagnosis of Asperger's Syndrome, High-Functioning Autism and High-Functioning ASD without a learning disability associated with Grampian Autistic Society, a family member or key worker for participants, 15 control participants attending a local community centre, and professionals within the field of ASD. The scale development was based on the literature of QOL assessment in other relevant disorders. Face/content validity was investigated through a developed feedback questionnaire given to the participants with ASD, their indentified proxies and the professionals in the field (n=46). There is currently no 'gold standard' for measuring QOL in ASD. Therefore, in order to investigate the concurrent validity of the QOL-ASD, the well-established generic measures WHOQOL-BREF and EQ-5D were used (n=30). To assess the QOL-ASD's test-retest validity, the scale was given again to the participants 7 days after the initial assessment (n=30).Due to the small number of participants included, the results presented here should be interpreted with caution, and could be considered as a pilot of a larger scale study. These results indicate that the QOL-ASD has good face/content validity, good concurrent validity, good test-retest validity and good internal consistency. A significant positive relationship between the QOL-ASD and age was detected.The preliminary results of the research into the QOL-ASD indicate that this scale is valid and reliable as a tool to measure QOL in ASD, and as such some evidence has been found to support its use in clinical practice and research with this group

Factors Associated with Self and Informant Ratings of the Quality of Life of People with Dementia Living in Care Facilities: A Cross Sectional Study

There is no consensus regarding the optimal approach to assessment of the quality of life of people with dementia. We undertook the present study to describe and determine the factors associated with ratings of the quality of life of a cohort of people with dementia living in a residential care facility.351 people with dementia living in residential care facilities, and their staff and family informants participated in this cross sectional observational study. Quality of life was measured using self (Quality of Life in Alzheimer's Disease [QoL-AD] scale), and informant (QoL-AD and Alzheimer's Disease Related QoL Scale) reports. 226 people (64%) with dementia (median MMSE 17; 12-21) were able to self rate the QoL-AD scale and these subjects' ratings were compared to ratings by staff and family. Both staff and family informant ratings of the QoL-AD underestimated self ratings (mean difference -7.8, 95% CI -8.8, -6.7 for staff rated QoL-AD; and mean difference -7.2, 95% CI -8.5, -6.0 for family rated QoL-AD). Self ratings of QoL were lower among people who were restrained, had fallen or had pain. Informant ratings of the QoL of the participants with dementia were consistently and significantly lower for people with severe cognitive impairment, who had fallen, had presence of neuropsychiatric symptoms, or where care giver distress was present. Documented restraint, reported pain and neuropsychiatric symptoms were independently associated with lower self rating of the QoL-AD in multivariate models. Cognitive impairment, case conferencing, hospitalizations and neuropsychiatric symptoms were found to be independently associated with staff rated ADRQL.The majority of people with dementia living in residential care facilities can rate their own QoL. Informant ratings underestimate self ratings of QoL of people with dementia, and appear to be associated with factors which are not associated with self ratings

Reminiscence groups for people with dementia and their family carers: pragmatic eight-centre randomised trial of joint reminiscence and maintenance versus usual treatment: a protocol

The growing number of people with dementia, and the increasing cost of care, provides a major incentive to develop and test methods of supporting them in the community for longer. Most attention has been given to pharmacological interventions, but there is increasing recognition that psychosocial interventions may be equally effective, even preferable where medication has negative side-effects. Reminiscence groups, run by professionals and volunteers, which use photographs, recordings and other objects to trigger personal memories are probably the most popular therapeutic approach to working with people with dementia, but there is little evidence for their effectiveness and cost-effectiveness. The recent inclusion of family carers in groups with people with dementia, notably in our own pilot studies, has generated informal evidence that this joint approach improves relationships between people with dementia and their carers, and benefits both

Case-finding of dementia in general practice and effects of subsequent collaborative care; design of a cluster RCT

<p>Abstract</p> <p>Background</p> <p>In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services.</p> <p>We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored.</p> <p>Methods and design</p> <p>Design: cluster randomised controlled trial with process evaluation.</p> <p>Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis.</p> <p>Intervention; case finding and collaborative care: 2 trained practice nurses (PNs) invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support.</p> <p>Control: GPs provide care and diagnosis as usual.</p> <p>Main study parameters: after 12 months both groups are compared on: 1) incident dementia (and MCI) diagnoses and 2) patient and caregiver quality of life (QoL-AD; EQ5D) and mental health (MH5; GHQ 12) and caregiver competence to care (SSCQ). The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level.</p> <p>Discussion</p> <p>This study will provide insight into the diagnostic yield and the clinical effects of case finding and collaborative care for individuals with suspected cognitive impairment, compared to usual care. A process evaluation will give insight into the feasibility of this intervention.</p> <p>The first results are expected in the course of 2013.</p> <p>Trial registration</p> <p>NTR3389</p