Development of the guideline ‘Challenging behaviour in adults with intellectual disability’

Abstract

Background Challenging Behaviour (CB) is a common problem among people with intellectual disability (ID), leading to a lower quality of life and a negative impact on the emotional well-being of family, staff and fellow clients. Additionally, reduced access to community services and (avoidable) high consumption of specialist care has been reported. This presentation will offer information on the development and content of the Dutch multidisciplinary guideline ‘Challenging behaviour in adults with ID’ that will be published in 2019. Methods The guideline was developed on the basis of the methodologic strategy of the AGREE II instrument. Two systematic reviews were conducted. Additionally, healthcare professionals were surveyed through an online questionnaire, interviews (n = 14) and focus groups (n = 6), and interviews were conducted with adults with ID (n = 20) and their family (n = 16). The draft guideline was reviewed by stakeholders and underwent a practice test. Results The first module of the guideline describes the assessment of (1) the CB itself, (2) potential factors that contribute to the presence or continuation of CB, and (3) the context in which CB occurs. Implementation will lead to a comprehensive, integrated diagnosis and assessment of the CB, the person and context. Module 2 enables health professionals to systematically and transparently select and apply interventions to resolve CB, whilst taking into account multiple factors as well as the specific context in which the CB occurs. Module 3 provides the medical, legal and ethical framework for (off-label) prescription of psychotropics. It explains the process for starting and discontinuing (off-label) psychotropics, the selection of appropriate medication and dosages, and the monitoring and evaluation of effects and side-effects. Conclusions The guideline is based on state of the art scientific and practice-based evidence and will contribute to a more structured approach in the care for people with ID and CB. Key messages Challenging behaviour is a common problem among people with intellectual disability and can have a negative impact on quality of life and the emotional well-being of family, staff and fellow clients. The development of the multidisciplinary guideline ‘Challenging behaviour in adults with ID’ can help to better understand and treat challenging behaviour in people with ID.