Recording of intellectual disability in general hospitals in England 2006–2019: Cohort study using linked datasets

Abstract

Background Accurate recognition and recording of intellectual disability in those who are admitted to general hospitals is necessary for making reasonable adjustments, ensuring equitable access, and monitoring quality of care. In this study, we determined the rate of recording of intellectual disability in those with the condition who were admitted to hospital and factors associated with the condition being unrecorded. Methods and findings Retrospective cohort study using 2 linked datasets of routinely collected clinical data in England. We identified adults with diagnosed intellectual disability in a large secondary mental healthcare database and used general hospital records to investigate recording of intellectual disability when people were admitted to general hospitals between 2006 and 2019. Trends over time and factors associated with intellectual disability being unrecorded were investigated. We obtained data on 2,477 adults with intellectual disability who were admitted to a general hospital in England at least once during the study period (total number of admissions = 27,314; median number of admissions = 5). People with intellectual disability were accurately recorded as having the condition during 2.9% (95% CI 2.7% to 3.1%) of their admissions. Broadening the criteria to include a nonspecific code of learning difficulty increased recording to 27.7% (95% CI 27.2% to 28.3%) of all admissions. In analyses adjusted for age, sex, ethnicity, and socioeconomic deprivation, having a mild intellectual disability and being married were associated with increased odds of the intellectual disability being unrecorded in hospital records. We had no measure of quality of hospital care received and could not relate this to the presence or absence of a record of intellectual disability in the patient record. Conclusions Recognition and recording of intellectual disability in adults admitted to English general hospitals needs to be improved. Staff awareness training, screening at the point of admission, and data sharing between health and social care services could improve care for people with intellectual disability.

Intellectual disability in the children of the Avon Longitudinal Study of Parents and Children (ALSPAC)

“…I have minor comments, as below: It is not surprising to me that ID is poorly identified in English HES data using F7x codes owing to coders' and clinician's preferences for the F81.9 (developmental disorders of scholastic skills) for ID - a recent publication has also highlighted this (see https://pubmed.ncbi.nlm.nih.gov/36940198/ 1 ). I can see why the authors haven't used this as it could potentially refer to people without ID, but I think there does need to be some recognition of this preference in the article - perhaps in the limitations section.…”