A survey on service users' perspectives about information and shared decision-making in psychotropic drug prescriptions in people with intellectual disabilities

Background: In people with intellectual disabilities and mental disorders and/or challenging behaviours, rates of psychotropic drug prescription are high. In clinical treatments and evaluations, all stakeholders should be involved in a process of shared decision-making (SDM). We aimed to investigate the perspectives of clients and their carers on clients’ treatments with psychotropic drugs. / Methods: We conducted a survey among adults with intellectual disabilities in a Dutch mental healthcare centre providing community, outpatient and inpatient care. Data were collected between January and June 2022. Questions focused on experiences with the provision of information, treatment involvement and SDM and participants' wishes in this regard. / Findings: Respondents (57 clients and 21 carers) were largely satisfied with the overall care from their clinicians, and with how information on the pharmacological treatment was provided verbally, but written information was insufficient or not provided. Seventy per cent of clients and 60% of carers reported being involved in medication decision-making. However, over 75% of participants desired greater involvement in SDM and over 60% in medication reviews. / Conclusions: Service users and representatives were satisfied about the treatment and verbal information on their psychotropic drug use. The provision of written information, the SDM process and ongoing evaluation of psychotropic medication use could be improved

First Steps Toward Positive Behavior Support in the Netherlands:A Pilot Study Exploring the Effectiveness of a Training for Staff

Despite the effectiveness of positive behavior support (PBS) in reducing challenging behaviors, the availability of PBS for individuals with intellectual disabilities is limited in many countries including the Netherlands. Training care staff supporting individuals with intellectual disabilities in PBS may be a way to improve the provision of PBS. We aimed to explore the preliminary effectiveness of a PBS training for staff in reducing challenging behaviors of individuals with intellectual disabilities. Using a one group, double pretest-posttest design, 24 staff members involved in the care of 11 adult individuals with intellectual disabilities and challenging behaviors participated. We assessed changes in challenging behaviors and quality of life of the individuals, in staff self-efficacy in dealing with challenging behaviors, and in the use of restraints, using staff rated questionnaires, structured interviews, and medical files. At posttest, we found significant reductions in challenging behaviors, improved quality of life, and increased staff self-efficacy, but no changes in the use of restraints. In contrast, no significant changes on any of the measures appeared between the two pretests. These findings suggest that a staff training in PBS may be effective for reducing challenging behaviors in individuals with intellectual disabilities

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

Aspects of long-term use of antipsychotic drugs on an off-label base in individuals with intellectual disability

Minder probleemgedrag bij mensen met verstandelijke beperking na stoppen antipsychoticagebruik Een derde deel van de bewoners van instellingen voor mensen met verstandelijke beperking gebruikt antipsychotica. Vaak zijn deze niet vanwege een psychotische ziekte voorgeschreven, maar om gedragsproblemen te bestrijden. Stoppen of verminderen van het gebruik van antipsychotica leidt juist tot afname van afwijkend gedrag. Ook daalt het gewicht. Bovendien neemt het risico op het Metabool Syndroom af; dit is de combinatie van te veel buikvet, verhoogde bloedsuiker, afwijkende bloedvetten en hoge bloeddruk, waardoor de kans op hart- en vaatziekten toeneemt. Dit blijkt uit onderzoek van AVG’er (Arts voor Verstandelijk Gehandicapten) en UMCG-onderzoeker Gerda de Kuijper. Zij promoveert op 4 september 2013 op haar proefschrift aan de Rijksuniversiteit Groningen. Antipsychotica zijn geneesmiddelen geïndiceerd voor het bestrijden van psychotische symptomen. Ongeveer 3 % van de mensen met een verstandelijke beperking lijdt aan een chronische psychotische ziekte. Uit onderzoek in woonvoorzieningen voor mensen met een verstandelijke beperking, bleek dat antipsychotica aan 32% van de bewoners voorgeschreven werd. Bij 80% van deze antipsychoticagebruikers was het gebruik langer dan 10 jaar, bij 58% was dit voor probleemgedrag en bij 22% voor psychotische symptomen of een chronisch psychotische ziekte. Langdurig gebruik van antipsychotica kan neurologische, metabole en hormonale bijwerkingen tot gevolg hebben. In haar onderzoek ging De Kuijper na of het gebruik van antipsychotica vanwege probleemgedrag afgebouwd kon worden in 14 of 28 weken. Afbouw mogelijk Uit de studie van De Kuijper blijkt dat volledige afbouw bij 43% van de 98 deelnemers mogelijk was; bij follow-up na 12 weken gebruikte 36% nog steeds geen antipsychotica Zowel in de groep die volledig had afgebouwd als in de groep bij wie dat niet gelukt was werd bij het merendeel geen gedragsverslechtering gezien. De resultaten van afbouw in 14 en afbouw in 28 weken waren vergelijkbaar. Gunstige effecten Bij gebruik van antipsychotica kunnen gezondheidsrisico’s voor overgewicht, metabole ontregeling, ontregeling van functies van primaire geslachtsorganen en bot calciumverlies toenemen. De resultaten van het onderzoek van De Kuijper lieten gunstige effecten zien op metabole symptomen: een vermindering van de tailleomvang (dus minder buikvet) en daling van het lichaamsgewicht en van de bloeddruk. Klinische toepassing Volgens De Kuijper hebben de resultaten van haar studie duidelijke consequenties voor de klinische praktijk. De Kuijper: ‘Behandelaars dienen zorgvuldig onderliggende oorzaken van gedragsproblemen bij mensen met een verstandelijke beperking te onderzoeken en kritisch te zijn op het direct instellen van een medicamenteuze behandeling’. Bij mensen met een verstandelijke beperking kunnen neurologische bijwerkingen van antipsychotica een rol spelen in het onderhouden van probleemgedrag. De Kuijper pleit daarom voor het stoppen of verminderen van antipsychotica bij gebruik buiten de geldige indicatie, zoals gebruik voor gedragsproblemen.‘Uit mijn proefschrift blijkt dat volledige afbouw al is te realiseren in een periode van 3-4 maanden’. Verder is zij een groot voorstander van het bevorderen van scholing en coaching van zorgverleners en behandelaars in het omgaan met probleemgedrag

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

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

Difficulties in Addressing Diagnostic, Treatment and Support Needs in Individuals with Intellectual Disability and Persistent Challenging Behaviours:A Descriptive File Study of Referrals to an Expertise Centre

Service providers may experience difficulties in providing appropriate care to optimize the functioning of individuals with intellectual disability and challenging behaviour. External consultation to identify and address the unmet support needs underlying the behaviour may be beneficial. Applying the multidimensional American Association Intellectual and Developmental Disabilities (AAIDD) model may facilitate this approach. We aimed to describe the content and outcomes of consultation for individuals with intellectual disability and challenging behaviour referred to the Dutch Centre for Consultation and Expertise in relation to the AAIDD model. Interventions were based on the clients’ diagnostic, treatment, and support needs and were categorized according to the five dimensions of the AAIDD model. Outcomes of the consultations were assessed based on reports in the file and rated as ‘clear improvement’, ‘improvement’ or ‘no improvement or deterioration’. In two-thirds of the 104 studied files, consultees were satisfied with the improvement in functioning. Interventions targeted the difficulties of the service providers in supporting their clients and were most often applied within the Health and Context dimensions of the AAIDD model. We may conclude that consultation of an expert team may be valuable to support the care providers, and the use of the AAIDD model may be helpful to address the unmet needs to improve the functioning of individuals with challenging behaviour.</p