Proxy and self-reported Quality of Life in adults with intellectual disabilities: Impact of psychiatric symptoms, problem behaviour, psychotropic medication and unmet needs.
Adults with ID say life is better than staff think—close the gap by fixing unmet needs and cutting unnecessary meds.
01Research in Context
What this study did
The team asked adults with intellectual disability to rate their own quality of life. They also asked staff or family to rate the same adults.
Next they looked at what made the two scores differ. They checked psychiatric symptoms, problem behavior, psychotropic drugs, and unmet service needs.
What they found
Self-ratings were always higher than proxy ratings. The gap got bigger when the person had unmet needs or took many medications.
Psychiatric symptoms and challenging behavior also pulled proxy scores down, even when the adult’s own score stayed steady.
How this fits with other research
Schmidt et al. (2010) saw the same self-proxy gap in a larger sample, giving the pattern its first solid footing. Spriggs et al. (2015) now adds clear predictors—medication load and unmet needs—so you know what to fix.
Berástegui et al. (2021) looked at younger adults (18-25) and found even poorer agreement, showing the gap widens with age. The 2015 adult data sit in the middle, forming a lifespan story: expect less concordance as clients move into transition years.
Horovitz et al. (2014) showed that any Axis-I diagnosis lowers QoL. The 2015 paper keeps psychiatric status in the mix but stresses medication count and unmet needs instead—practical levers a BCBA can actually move.
Why it matters
Stop guessing how clients feel. Give the QoL form directly to the adult; use proxy ratings only as background. When scores clash, audit unmet needs first and review psychotropic load second. These two moves may lift both the real QoL and the proxy score you report to funders.
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02At a glance
03Original 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.
Research in developmental disabilities, 2015 · doi:10.1016/j.ridd.2015.07.022