Proxy and self-reported quality of life in adults with intellectual disabilities: impact of psychiatric symptoms, problem behaviour, psychotropic medication and unmet needs

Proxies often underestimate the subjective Quality of Life (QoL) of adults with intellectual disability (ID). However, little is known about the reasons for these differences. Accordingly, the purpose of the present study is to, firstly, compare the self-reported QoL of adults with ID with proxy rep...

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Bibliographic Details
Main Authors: Koch, Andrea (Author) , Salize, Hans Joachim (Author)
Format: Article (Journal)
Language:English
Published: October-November 2015
In: Research in developmental disabilities
Year: 2015, Volume: 45-46, Pages: 136-146
ISSN:1873-3379
DOI:10.1016/j.ridd.2015.07.022
Online Access:Verlag, Volltext: http://dx.doi.org/10.1016/j.ridd.2015.07.022
Verlag, Volltext: http://www.sciencedirect.com/science/article/pii/S0891422215001080
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Author Notes:Andrea D. Koch, Anke Vogel, Thomas Becker, Hans-Joachim Salize, Elke Voss, Amelie Werner, Katrin Arnold, Matthias Schützwohl
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Summary:Proxies often underestimate the subjective Quality of Life (QoL) of adults with intellectual disability (ID). However, little is known about the reasons for these differences. Accordingly, the purpose of the present study is to, firstly, compare the self-reported QoL of adults with ID with proxy reports from staff of sheltered working and housing facilities, and, secondly, to identify possible differences of the impact of four potential predictor variables. Data of 102 adults with ID were collected as part of the MEMENTA study (‘Mental health care provision for adults with ID and a mental disorder’). Results show that self-report QoL scores ranged from 72.6 to 86.8. Both proxies consistently reported lower QoL scores and agreement between self and proxy ratings was predominantly poor. Unmet needs and psychotropic medication were identified as the most important predictors of reduced self-rated QoL, whereas an increase of psychiatric symptoms, problem behaviours, and psychotropic medication best predicted the reduced QoL proxy ratings. To conclude, proxies still have to strive for a more holistic approach in surrogate QoL assessments and according to adults with ID, service providers should focus on a reduction of unmet needs and psychotropic medication to further improve QoL.
Item Description:Gesehen am 08.01.2018
Available online 31 July 2015
Physical Description:Online Resource
ISSN:1873-3379
DOI:10.1016/j.ridd.2015.07.022