Less antipsychotics, more Quality of Life tapering strategies for adults with intellectual disabilities and challenging behaviour

Background: The long-term off-label use of antipsychotics to manage challenging behaviour in adults with intellectual disabilities is common practice. However, there is limited evidence supporting its effectiveness and safety. Additionally, individuals who use off-label antipsychotics are at risk of experiencing side effects that may negatively impact their Quality of Life. Aims: This study investigates the impact of tapering off-label antipsychotics on Quality of Life, challenging behaviour, general functioning, and side effects in adults with intellectual disabilities. Materials and methods: Twenty-five adults with intellectual disabilities and challenging behaviour were monitored over a 40-week period during which off-label antipsychotic medications were gradually tapered. The tapering process was guided by a multidisciplinary team. The primary outcome was Quality of Life, measured using the Anamnestic Comparative Self-Assessment (ACSA), supplemented by a self-designed instrument tailored to the individual. Secondary outcomes included challenging behaviour, general functioning, and side effects, assessed using the Aberrant Behaviour Checklist (ABC), World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), Section 3B of the Supports Intensity Scale (SIS), and Matson's Evaluation of Drug Side Effects (MEDS). Results: At the end of the study (40 weeks), 22 participants were taking lower dosages of antipsychotic medication, with two participants tapering off the antipsychotic drugs entirely. On average, participants reduced their medication dosage by 39.7 %. Following tapering, improvements were observed in Quality of Life and overall functioning, alongside reductions in challenging behaviour and side effects. Conclusion: The tapering of off-label antipsychotics in adults with intellectual disabilities resulted in a positive impact on Quality of Life. These findings suggest that Quality of Life could serve as a useful outcome measure to support the consideration of more limited off-label use of antipsychotics.