Effects of positive behaviour support delivered by direct staff on challenging behaviours and quality of life of adults with intellectual disabilities: A multicentre cluster-controlled trial.

BACKGROUND: Effects of staff provided positive behaviour support (PBS) for individuals with intellectual disabilities are unclear. METHOD: Using a multicentre non-randomised cluster controlled design, 26 teams of residential group homes, including 245 staff members of 167 individuals with intellectual disabilities, were allocated to a PBS or control group. Conducting multilevel analyses (n = 123) we examined individuals' changes in irritability, other challenging behaviours and quality of life. RESULTS: Compared to controls, irritability did not significantly decrease more in the intervention group, but lethargic behaviours did. Personal development and self-determination significantly increased. Irritability of individuals in the PBS group with higher levels of irritability or lower levels of intellectual disability significantly reduced more compared to controls. CONCLUSIONS: PBS was effective in reducing irritability of individuals with severe levels of irritability or intellectual disabilities. Moreover, PBS decreased lethargic behaviours and improved several domains of quality of life.

Preferred outcome measures in treatments for challenging behaviour in individuals with intellectual disabilities: Results of an inclusive Delphi method.

BACKGROUND: Interventions for challenging behaviours in individuals with intellectual disabilities benefit from outcome monitoring that takes clients' preferences into account. We determined clients' and representatives' preferred outcome domains and measures to secure their involvement in treatment decisions for challenging behaviours. METHOD: We used an inclusive Delphi method. A focus group of individuals with mild intellectual disabilities and representatives of those with moderate and severe intellectual disabilities prepared the first round by assisting us in collecting possible outcomes. Panels of individuals with intellectual disabilities and representatives were composed to achieve consensus on instruments for preferred outcome domains. RESULTS: Preferred outcome domains were behaviour, side-effects of psychotropic drugs, quality of life, daily functioning, caregiver burden and family quality of life. Corresponding outcome measures included self-report, interview and proxy-scales, including spoken versions. CONCLUSION: Including the preferred domains on outcomes of interventions for challenging behaviours is recommended. Research on corresponding outcome measures is necessary.

Exploring the association of staff characteristics with staff perceptions of quality of life of individuals with intellectual disabilities and challenging behaviours.

BACKGROUND: This study aimed to examine the associations between individual staff and staff team characteristics and quality of life of individuals with intellectual disabilities and challenging behaviours. METHOD: With multilevel analyses, we examined educational level, experience, attitudes and behaviours of 240 staff members, in relation to their perception of quality of life of 152 individuals with intellectual disabilities and challenging behaviours they cared for. RESULTS: Two individual staff characteristics were related to better quality of life: higher educational and self-reflection levels. Of the team characteristics, higher educational level, higher self-efficacy and more friendly behaviour were associated with better quality of life. Unexpectedly, higher staff-individual ratio was related to lower quality of life. CONCLUSIONS: Both individual staff and staff team characteristics are associated with quality of life, indicating the need to take staff team characteristics into account when examining quality of life.

An open label discontinuation trial of long-term used off-label antipsychotic drugs in people with intellectual disability: The influence of staff-related factors.

BACKGROUND: Results of discontinuation of antipsychotics in people with intellectual disability are variable and may depend on staff factors. METHOD: We attempted to taper off antipsychotics in 14 weeks after which participants were free to restart. We investigated the influence of support professionals' feelings towards challenging behaviour, their knowledge of psychotropic drugs and clinicians' judgements of participants' behavioural functioning on whether or not antipsychotics were completely discontinued after 16, 28 and 40 weeks. RESULTS: Of the 129 participants, 61% achieved discontinuation at 16 weeks; at 28 and 40 weeks, 46% and 40% were completely discontinued. Staff's feelings of Depression/Anger towards their client's behaviour, less knowledge about psychotropic medication and clinicians' judgements of behavioural worsening were negatively associated with achievement of discontinuation. CONCLUSIONS: To enhance discontinuation off-label drug use, staff's feelings should be explored, their knowledge of psychotropic drugs improved and reasons for clinicians' judgements of participants' behavioural worsening investigated.

An Open-Label Discontinuation Trial of Long-Term, Off-Label Antipsychotic Medication in People With Intellectual Disability: Determinants of Success and Failure.

Although physicians are aware of the risks of prescribing long-term off-label antipsychotics in people with intellectual disability, attempts to discontinue often fail. This study aimed to identify potential determinants of successful and failed discontinuation. Long-term off-label antipsychotics were tapered in 14 weeks, with 12.5% of baseline dose every 2 weeks. Participants living in facilities offered by intellectual disability service providers, ≥6 years, with an IQ <70 were eligible to discontinue antipsychotic use, as judged by their physicians. The primary outcome was achievement of complete discontinuation at 16 weeks; changes in the Aberrant Behavior Checklist (ABC) and its 5 subscales were secondary outcomes. Potential determinants of the success or failure in discontinuing antipsychotics were psychotropic drug use and participants' living circumstances, medical health conditions, and severity of behavioral symptoms and neurologic side effects. Of 499 eligible clients, 129 were recruited. Reasons for client non-participation were clinician concerns that discontinuation might increase challenging behaviors and changes in clients' environment. Of the 129 participants, 61% had completely discontinued antipsychotics at 16 weeks, 46% at 28 weeks, and 40% at 40 weeks. ABC total scores increased in 49% of participants with unsuccessful discontinuation at 16 weeks. Autism, higher dose of antipsychotic drug, higher ABC and akathisia scores, and more-frequent worsening of health during discontinuation were associated with a lower incidence of complete discontinuation. Thus, in a selected sample of participants whom responsible clinicians had deemed discontinuation of antipsychotics could be attempted, 40% had achieved and maintained discontinuation at end of follow-up. Physicians should try to address patients' conditions that may hamper discontinuation.

Assessment of Drug-Associated Extrapyramidal Symptoms in People With Intellectual Disability: A Comparison of an Informant-Based Scale With Clinical Rating Scales.

Drug-associated extrapyramidal symptoms (EPS) in people with intellectual disability (ID) may be difficult to recognize, and clinicians' assessments may be hampered by lack of patients' capacities to adequately cooperate and by lack of reliable instruments to measure EPS in this population. Therefore, we compared assessments based on professional caregivers' observations with the informant-based validated Matson Evaluation of Drug Side Effects (MEDS) scale with assessments by clinicians using a set of clinical rating scales, most of which have not been validated for use in this population. We also compared 2 dyskinesia scales by replacing the widely used but not validated Abnormal Involuntary Movement Scale with the validated Dyskinesia Identification System Condensed User Scale (DISCUS) in half of the set of scales. We used linear regression to analyze associations between EPS as measured with MEDS and EPS as measured with the sets of scales at item and at scale level.Of the 30 MEDS items, 6 were associated with items of the other scales. At scale level, we found no significant associations. Comparison of the Abnormal Involuntary Movement Scale with the DISCUS indicated that the DISCUS may be preferable for use in people with ID.Results may be explained by shortcomings in education and training of caregivers and by lack of reliable assessments and rating scales for EPS in people with ID.We conclude that there is an urgent need for education and training of care professionals and clinicians in this area and for studies investigating the psychometric properties of rating scales.

[Challenging behaviour in patients with intellectual disability]. / Gedragsproblemen bij mensen met een verstandelijke beperking.

Challenging behaviour in patients with intellectual disability may be caused by physical, psychological and environmental factors. In 3 case histories, a multidisciplinary assessment in diagnosis and treatment is shown to be needed. A 48-year-old man with mild intellectual disability presented with cognitive deterioration, aggressive behaviour and physical symptoms. The diagnosis was mood disorder and dissociative symptoms. His functioning improved during and after treatment with psychotropic drugs and non-verbal psychotherapy. A 10-year-old girl with moderate intellectual disability who presented with temper tantrums was diagnosed as having no psychiatric disorder, but symptoms caused by environmental factors. After proper support and education for the parents, the patient's challenging behaviour disappeared. A 61-year-old woman with Down syndrome and Alzheimer's dementia presented with screaming, restlessness, struggling during daily care, and confusion. She was prescribed haloperidol and oxazepam and the screaming behaviour decreased. However, she kept on struggling while being cared for and was restless while sitting in her wheelchair. After a proper medical examination it appeared that the problem behaviour was caused by collapsed vertebrae and osteoporosis.