title: Proxy and self-reported Quality of Life in adults with intellectual disabilities: Impact of psychiatric symptoms, problem behaviour, psychotropic medication and unmet needs.
abstract: 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.
authors.affiliation: Mental Health Services Research Group, Department of Psychiatry and Psychotherapy, Technische Universität Dresden, Fetscherstrasse 74, D-01307 Dresden, Germany.
authors.forename: Andrea D
authors.initials: AD
authors.lastname: Koch
authors.affiliation: Mental Health Services Research Group, Department of Psychiatry and Psychotherapy, Technische Universität Dresden, Fetscherstrasse 74, D-01307 Dresden, Germany.
authors.forename: Anke
authors.initials: A
authors.lastname: Vogel
authors.affiliation: Klinik für Psychiatrie und Psychotherapie II, Universität Ulm, Ludwig-Heilmeyer-Strasse 2, D-89312 Günzburg, Germany.
authors.forename: Thomas
authors.initials: T
authors.lastname: Becker
authors.affiliation: Arbeitsgruppe Psychiatrische Versorgungsforschung, Zentralinstitut für Seelische Gesundheit, J5, D-68159 Mannheim, Germany.
authors.forename: Hans-Joachim
authors.initials: HJ
authors.lastname: Salize
authors.affiliation: Arbeitsgruppe Psychiatrische Versorgungsforschung, Zentralinstitut für Seelische Gesundheit, J5, D-68159 Mannheim, Germany.
authors.forename: Elke
authors.initials: E
authors.lastname: Voss
authors.affiliation: Arbeitsgruppe Psychiatrische Versorgungsforschung, Zentralinstitut für Seelische Gesundheit, J5, D-68159 Mannheim, Germany.
authors.forename: Amelie
authors.initials: A
authors.lastname: Werner
authors.affiliation: Klinik für Psychiatrie und Psychotherapie II, Universität Ulm, Ludwig-Heilmeyer-Strasse 2, D-89312 Günzburg, Germany.
authors.forename: Katrin
authors.initials: K
authors.lastname: Arnold
authors.affiliation: Mental Health Services Research Group, Department of Psychiatry and Psychotherapy, Technische Universität Dresden, Fetscherstrasse 74, D-01307 Dresden, Germany. Electronic address: Matthias.Schuetzwohl@uniklinikum-dresden.de.
authors.forename: Matthias
authors.initials: M
authors.lastname: Schützwohl
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D016014:Linear Models; D008297:Male; D001523:Mental Disorders / Q000188:drug therapy / Q000523:psychology*; D008603:Mental Health; D008875:Middle Aged; D020380:Needs Assessment; D000066553:Problem Behavior / Q000523:psychology*; D019727:Proxy; D011619:Psychotropic Drugs / Q000627:therapeutic use; D011788:Quality of Life / Q000523:psychology*; D012111:Residence Characteristics; D057566:Self Report; D012759:Sheltered Workshops; D055815:Young Adult
chemical_list: D011619:Psychotropic Drugs
keywords: Problem behaviour; Psychiatric symptomatology; Psychotropic medication; Quality of Life; Self and proxy report; Unmet needs