• We studied health-related quality of life in people who use long-term antipsychotics.

• Mental health status was lower compared to the general population.

• Emotional wellbeing was influenced by irritability and lethargy.

• Physical wellbeing was influenced by parkinsonism and autonomic symptoms.

Many people with intellectual disabilities use long-term antipsychotics for challenging behaviour and experience side-effects from these drugs, which may affect Health-related Quality of Life (HQoL).

This study aimed to investigate HQoL in people with intellectual disabilities who use long-term antipsychotics and to investigate its associations with challenging behaviour and physical symptoms often associated with antipsychotics.

Materials and methods
We used baseline data of two studies of long-term used antipsychotics. The RAND-36 and the emotional and physical wellbeing subscales of the Personal Outcome Scale (POS) were used to assess HQoL. Associations with challenging behaviour, measured with the Aberrant Behavior Checklist (ABC) and physical symptoms (extrapyramidal, autonomic, metabolic) with HQoL outcomes were analysed by univariate and multivariate linear regression.

The mental subscales of the RAND-36 and emotional wellbeing of the POS were associated with the irritability and lethargy ABC-subscales. Physical wellbeing was negatively associated with parkinsonism urinary problems, dysphagia and temperature dysregulation possibly due to antipsychotics use.

Both mental and physical wellbeing are related to challenging behaviour and physical symptoms associated with antipsychotics. Therefore HQoL could be a helpful measure when balancing benefits and disadvantages of antipsychotics prescribed for challenging behaviour.

Lotte Ramerman, Pieter J. Hoekstr, Gerdade Kuijper
Research in Developmental Disabilities, Volume 75, April 2018