Recording of intellectual disability in general hospitals 2006-2019: cohort study using linked datasets

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 two linked datasets of routinely collected clinical data. 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 2.7-3.1%) of their admissions. Broadening the criteria to include a non-specific code of learning difficulty increased recording to 27.7% (95%CI 27.2-28.3%) of all admissions. 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. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The authors received no specific funding for this work. RSt is part-funded by: i) the National Institute for Health Research (NIHR) Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust and King’s College London ii) the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust iii) the DATAMIND HDR UK Mental Health Data Hub (MRC grant MR/W014386). ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The SLaM BRC Case Register and CRIS have received ethical approval from the Oxfordshire Research Ethics Committee C (18/SC/0372) for secondary analysis of deidentified health data. Researchers did not have access to patient-identifiable information. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes The data used in this work have been obtained from the Clinical Record Interactive Search (CRIS), a system that has been developed for use within the NIHR Mental Health Biomedical Research Centre (BRC) at the South London and Maudsley NHS Foundation Trust (SLaM), and Hospital Episode Statistics (HES), a dataset collated by NHS Digital. Individual-level data are restricted in accordance with patient led governance established at SLaM, and by NHS Digital in the case of linked HES data. CRIS data are available for authorised researchers who meet the criteria for access as (1) SLaM employees or (2) those having an honorary contract or letter of access from SLaM. Further details can be obtained by e-mailing cris.administrator{at}kcl.ac.uk