A study of life years lost and care pathways in people with learning disabilities: a real-world observational study

INTRODUCTION

People living with learning disabilities (LD) are known to experience mortality disparities but the relative contribution of social, genetic, and health-related factors is not clear.

AIMS

The aims of this thesis were to:

1. compare differential mortality in people with and without LD;

2 compare differential life expectancy in people with and without LD;

3 quantify the impact and magnitude of sociodemographic factors, comorbidities and health needs on premature deaths; and

4 explore primary and secondary care pathways and causes of death.

METHODS

The project used the Clinical Practice Research Datalink (CPRD) and linked hospital and mortality data from England in 2000–2019 to compare individuals (aged 10+ years) with and without LD (n=33,867 vs n=980,586). Parametric statistics (Poisson regression [Aims 1, 4], flexible parametric methods [Aim 2]) and propensity scores [Aim 3] were utilised. Covariates included age, gender, deprivation, severe health needs, genetic syndromes and comorbidities.

RESULTS

Consistent differential mortality disparities were observed between the LD and comparison cohorts over time. Standardised mortality ratios ranged from 2.91 ([95% CI] 2.69–3.15) to 3.06 (2.84–3.29)) and were particularly high from epilepsy and respiratory-related causes. In 2017–2019, additional years expected to live at 10 years was 57.1 (54.9–59.4) in the LD cohort compared to 72.3 (71.9–72.7) in the comparison cohort, representing a loss in life years of 21%. Severe health needs were high in the LD cohort (46.4% vs 9.7%) but did not explain all of the life expectancy disadvantages. Even in those without any of the health needs, life expectancy was still 12% lower in the LD cohort. People with LD had more primary care and hospital admissions but lower uptake of cancer screening. Methodological considerations included immortal time bias and knot placements for the flexible parametric approaches adopted.

CONCLUSIONS

This thesis continues to highlight the mortality disparities that people with LD experience. Such disparities can only partially be explained by deprivation, co-occurring health needs, comorbidities and genetic syndromes. Recommendations and policy implications are discussed.