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Quality of life in adults with intellectual disability

Buxton, Helen; (2024) Quality of life in adults with intellectual disability. Doctoral thesis (Ph.D), UCL (University College London). Green open access

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Abstract

Enhancing Quality of Life (QoL) is a key goal in supporting people with intellectual disability. A psychometrically sound measurement tool is essential to evaluate the effectiveness of services and interventions based on their impact on QoL. The Personal Outcomes Scale (POS) was developed to measure the QoL of adults with intellectual disability, but the psychometric properties of the English language version have never been tested. Sensitivity to change of POS in any language has not been tested. My PhD investigated the measurement properties of POS for adults (18+) with intellectual disability in the UK. Using data from 310 adults, confirmatory factor analysis was conducted. Convergent and divergent validity were assessed with data from 100 participants, and sensitivity to change was evaluated with data from 83 participants collected 12 months apart. Analyses also compared health and social care costs to POS scores. The factor structure did not confirm the theoretical QoL model. A significant proportion of variance in POS scores was due to interviewer effects. POS showed moderate correlation with convergent and divergent measures and an independent association with leisure engagement. However, there was low probability that POS was sensitive to change over 12 months. Individuals who experienced better QoL did not incur higher or lower costs than those with poorer QoL Further research is needed before POS can be recommended as outcome measure for research and evaluation. My studies revealed gaps in knowledge regarding the nature of change in QoL. Contextualisation of findings in relevant theory suggest QoL may not have utility as impact measure. Interventions should be evaluated with discrete measures which are directly linked to activities and known to be sensitive to change.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: Quality of life in adults with intellectual disability
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Copyright © The Author 2024. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
Keywords: Intellectual disability, Quality of life, Mental health, Psychometric evaluation, Sensitivity to change
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10197591
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