Improving prediction of preventable premature mortality in people with learning disabilities in primary care

This study aims to (1) define the population of people with learning disabilities and subgroups within this population in the QResearch primary care database and (2) identify the priorities for improving primary health care in people with learning disabilities and (3) to develop and refine a prototype clinical risk prediction tool. This tool will be designed for GPs to improve their annual health check service, with the primary aim of reducing preventable and premature deaths in people with learning disabilities.

The study objectives are to:

Define and describe the population of adults with learning disabilities and subgroups within this population, by demographic characteristics and disease burden (Objective 1);

Describe trends in mortality outcomes of the population of adults with learning disabilities in England between 1990 and 2024, and identify highest priority group and cause of death to be targeted with a clinical risk prediction tool for GPs (Objective 2);

Develop and internally validate a risk prediction model for a specific group within the learning disability population and most preventable cause of death (Objective 3).

GP: primary care data will include data on population demographics, lifestyle factors, learning disability, learning disability care, comorbidities, cancer, conditions associated with learning disability, mental health, medication prescriptions, and vaccinations.

HES: secondary care data will include data on learning disability, comorbidities, conditions associated with learning disability, mental health, and cancer.

COVID-19 Vaccination: dose, date and type of COVID-19 vaccine.

Civil Registration (mortality): deaths occurring during the study period including date of death, and underlying cause of death and individual causes of death.

Cancer Registry: cancer diagnoses recorded during study period including date of diagnosis, type, location, stage, grade, etc.

Emma Copland