Do demographic, and clinical characteristics influence meeting NICE quality standards for young people transitioning to adult intellectual disability services?

Abstract

Purpose This study aims to evaluate the quality of transition from child and adolescent services to adult intellectual disability services, using the relevant National Institute for Health and Care Excellence (NICE) standard (QS140). In addition, this study also identifies any differences in transition quality between those young people with intellectual disability with and without autism. Design/methodology/approach Using routinely collected clinical data, this study identifies demographic and clinical characteristics of, and contextual complexities experienced by, young people in transition between 2017 and 2020. Compliance with the quality standard was assessed by applying dedicated search terms to the records. Findings The study highlighted poor recording of data with only 22% of 306 eligible cases having sufficient data recorded to determine compliance with the NICE quality standard. Available data indicated poor compliance with the standard. Child and adolescent mental health services, generally, did not record mental health co-morbidities. Compliance with three out of the five quality statements was higher for autistic young people, but this only reached statistical significance for one of those statements (i.e. having a named worker, p = 0.02). Research limitations/implications Missing data included basic clinical characteristics such as the level of intellectual disability and the presence of autism. This required adult services to duplicate assessment procedures that potentially delayed clinical outcomes. This study highlights that poor compliance may reflect inaccurate recording that needs addressing through training and introduction of shared protocols. Originality/value To the best of the authors’ knowledge, this is the first study to examine the transition process between children’s and adults’ intellectual disability health services using NICE quality standard 140.

Assessing adherence to National Institute for Health and Care Excellence dementia assessment and diagnosis guidelines in adults with intellectual disability: a retrospective cohort study

“…This highlighted incomplete recording by clinical staff within the electronic patient record, indicating that other individuals meeting the study criteria may not have been identified. Other studies have found missing data in electronic patient records of individuals with intellectual disability, and missing data has been found to lead to poorer access to health care for those individuals (Getzen et al , 2023; Soper et al , 2022). A possible explanation for the lack of ICD 10 codes entered on the electronic patient record is that diagnostic codes are often recorded in psychiatry clinic letters, rather than officially uploaded to the electronic patient record as is the expected procedure.…”

“…These guidelines apply to all adults with suspected dementia including people with intellectual disability. Poor adherence to other NICE guidelines within the intellectual disability population has been previously found (Soper et al, 2022).…”