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

The Mindful Healthcare Scale (MHS):Development and initial validation: The Mindful Healthcare Scale (MHS)

Objectives: Psychological flexibility is associated with reduced burnout and improved wellbeing in healthcare professionals. This paper outlines the development and initial validation of the Mindful Healthcare Scale (MHS), a novel measure of psychological flexibility in healthcare professionals. Methods: This paper comprises of three studies drawing on the following samples. Sample 1 (n = 480) and Sample 2 (n = 196) were cross-sectional samples of healthcare professionals. Sample 3 (n = 162) was the baseline sample of a longitudinal study who were followed up after a six-month interval. Seventy-seven participants of sample 3 provided test-retest data at six months. Classical test theory was used to evaluate the psychometric properties of the Mindful Healthcare Scale. Sample One was used to conduct an exploratory factor analysis. A confirmatory factor analysis was undertaken in sample two. Sample two and three were used to test the convergent validity and concurrent validity of the MHS via corelation with measures of burnout, wellbeing, general psychological flexibility, and self-compassion. Incremental validity of the MHS was assessed in predicting wellbeing and burnout after controlling for general psychological flexibility. The sub sample of Sample 3 was used to assess test-retest reliability. Results: In study one, exploratory factor analysis led to a three-factor structure that was labelled ‘engaged’, ‘awareness’, and ‘defusion’. In study two, confirmatory factor analyses supported this model. Study 3 supported the convergent validity, construct validity, incremental validity and test-retest reliability of the MHS. Internal reliability was found to be good across all samples. Conclusions: The MHS is a psychometrically sound measure of psychological flexibility in healthcare contexts. It is hoped that this measure will contribute to research and practice that aims to understand and enhance the wellbeing and training of healthcare professionals.</p

Quality of life in dementia

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The Group Activity Form: Is it Valid and Reliable?

The Group Activity Form (GAF; expanded from Bender et al 1987), a tool for evaluating group members' participation in group sessions, has been successfully used, but its reliability and validity have not been established. This was the aim of the present study. In order to investigate the interrater reliability of the GAF, three independent raters used the GAF to score 96 people with dementia attending a reminiscence group. The group was conducted by the occupational therapy department in an assessment ward for people with dementia. To explore the concurrent validity of the GAF, it was hypothesised that, with this client group, a correlation could be expected between how successful the group members were in engaging in group activity, measured by the GAF, and their cognitive abilities. To measure the latter, the Clifton Assessment Procedure for the Elderly (CAPE; Pattie and Gilleard 1979), a measure well established and validated in this setting, was used. The results showed a significant interrater reliability on all the items of the GAF. There was some evidence for the hypothesised correlation between the GAF and the CAPE. This study is a useful starting point for further research to investigate other aspects of the validity and reliability of the GAF. </jats:p