Assessment & Research

Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs.

Scheifes et al. (2016) · Research in developmental disabilities 2016
★ The Verdict

Most adults with ID on psychotropics suffer side effects that directly lower quality of life.

✓ Read this if BCBAs serving adults with ID in residential or day programs.
✗ Skip if Clinicians who only treat typically developing children.

01Research in Context

01

What this study did

Scheifes et al. (2016) tracked 103 adults with intellectual disability who take psychotropic drugs for challenging behavior. They counted every side effect and linked each one to the person’s quality-of-life score.

The team used a before-and-after design with no control group. They simply watched, recorded, and compared.

02

What they found

Eighty-four out of every 100 adults had at least one adverse event. More side effects meant lower quality-of-life scores.

The drugs meant to calm behavior were also the drugs that made life harder.

03

How this fits with other research

de Kuijper et al. (2013) saw the same warning signs earlier. In 99 long-term antipsychotic users, half had stiff or shaky movements and nearly half were overweight. Their data hinted at harm; Arlette’s data proves harm hurts daily life.

Petry et al. (2007) looked at antidepressants and found weak help for aggression. Arlette shows the cost of that weak help: lots of side effects.

Boswell et al. (2023) widened the lens. A whole country of adults with ID fills psychotropic scripts 12 times more often than peers. Arlette tells us what those high numbers feel like for the person swallowing the pill.

04

Why it matters

If you write behavior plans for adults with ID, treat every psychotropic order as a trial that can fail. Ask about dry mouth, falls, weight gain, and mood drops at each visit. Log them, graph them, and share the chart with the prescriber. Your data may be the push needed to taper or switch, saving side effects and protecting quality of life.

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Start a simple side-effect checklist for each client on psychotropics and review it weekly.

02At a glance

Intervention
not applicable
Design
pre post no control
Sample size
103
Population
intellectual disability
Finding
negative
Magnitude
large

03Original abstract

BACKGROUND: Psychotropic drugs are prescribed to approximately 30-40% of adults with intellectual disability (ID) and challenging behaviour, despite the limited evidence of effectiveness and the potential of adverse events. AIMS: To assess the prevalence of adverse events in association with psychotropic drug use in adults with ID and challenging behaviour and to examine the relation of these adverse events with the person's quality of life. METHOD: The presence of adverse events was measured with a questionnaire that had to be filled in by the physicians of the participants. Movement disorders were measured separately with a standardised protocol. The strength of the association between adverse events and Intellectual Disability Quality of Life-16 (IDQOL-16), and daily functioning was investigated using linear regression analyses, taking into account the severity of disease (CGI-S) as potential confounder. RESULTS: Virtually all of 103 adults with ID and challenging behaviour had at least one adverse event (84.4%) and almost half had ≥3 adverse events (45.6%) across different subclasses. Using psychotropic drugs increased the prevalence of adverse events significantly. Respectively 13% of the patients without psychotropic drugs and 61% of the patients with ≥2 psychotropic drugs had ≥3 adverse events. Having adverse events had a significantly negative influence on the quality of life. CONCLUSIONS: A large majority of all patients had at least one adverse event associated with psychotropic drug use. More attention is needed for these adverse events and their negative influence on the quality of life of these patients, taking into account the lack of evidence of effectiveness of psychotropic drugs for challenging behaviour.

Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2015.11.017