Dying from avoidable causes: a cohort prospective study to understand the characteristics of people with intellectual disabilities at high risk

Abstract

Purpose

This study aims to investigate the demographic and clinical characteristics associated with different risk stratification levels on the Decision Support Tool for Physical Health (DST-PH). The DST-PH was designed to stratify risk of avoidable mortality in adults with intellectual disabilities.

Design/methodology/approach

A prospective cohort study design was used. Data, including age, gender, ethnicity and completed DST-PH assessments, was collected from adults with intellectual disabilities within an NHS trust in the North-West of England. Descriptive statistics and a risk factor analysis were used to investigate differences between those rating Red, Amber and Green on the DST-PH.

Findings

Risk factor analysis revealed key clinical indicators linked to avoidable mortality. Notably, those experiencing posture or mobility difficulties, transitions in care, an untreated or unstable mental health condition or significant behavioural problems were identified to be at significantly heightened risk of avoidable death. These findings emphasise the importance of proactively recognising and addressing these experiences, particularly posture- and mobility-related challenges, in individuals with intellectual disabilities. It is important to note this study’s findings are based on a small sample size. Therefore, further research with a larger and more diverse population is recommended to validate and expand upon these results.

Originality/value

To the authors’ knowledge, this is the first study which has used a risk stratification tool to investigate the clinical and demographic characteristics of individuals with intellectual disability at higher risk of avoidable mortality.

Citation

Arnold, R.M., Acton, D. and Jaydeokar, S. (2024), "Dying from avoidable causes: a cohort prospective study to understand the characteristics of people with intellectual disabilities at high risk", Tizard Learning Disability Review, Vol. 29 No. 3/4, pp. 154-173. https://doi.org/10.1108/TLDR-10-2023-0027