People with Down syndrome have poorer health than people in the general population. As people with Down syndrome are living longer, we need to know what kind of health conditions they develop and at what ages, and if these differ between men and women to provide them with the right care at the right time.
We will use CPRD data to look at long-term health conditions (health conditions that need ongoing management over a number of years, e.g. obesity, diabetes) and multiple morbidity (having two or more health conditions) in people with Down syndrome and compare them to the general population and to people with other intellectual disabilities.
We will look at whether health conditions and death rates are different in men and women. We will use innovative methods to understand at what age multiple morbidity starts to increase and the order in which people with Down syndrome develop new health conditions, as it may differ from other people. We will then look at whether adults with Down syndrome can be grouped together based on their combination of health conditions.
By studying people with Down syndrome, we can help to make sure they receive better healthcare, while finding out new things about health conditions in the general population and people with other intellectual disabilities. This is important with the introduction of the new Down syndrome Act in April 2022 which states that the Government and the NHS should develop new guidance to improve the care for people with Down syndrome.
The Down syndrome (DS) phenotype is complex and impacts multiple bodily systems. People with DS are more likely to develop many long-term health conditions (health conditions that require ongoing management over a period of years, e.g. obesity, diabetes) and adults with DS are at a higher risk of multiple morbidity. To improve care and optimise the management of long-term conditions, healthcare guidance for clinicians needs to focus on potential sex differences and delivering the right care at the right time in accordance with the Down syndrome Act 2022.
Objectives:
We will include people with DS in the CPRD datasets (GOLD and Aurum) and linked data and examine the similarities and differences in multiple morbidity patterns by sex and compared to general population and people with other intellectual disabilities.
Methods:
We will select a cohort of individuals with DS from CPRD and linked data and conduct cross-sectional and longitudinal analyses in comparison with two sex, age and general practice matched control groups: individuals from the general population, and those who have other intellectual disabilities but not DS:
1. Use traditional multivariable models (Cox and Poisson regressions) to examine sex differences in the development of health conditions and potential differences in mortality.
2. Apply Emax modelling to examine the earliest age at which multiple morbidity start to increase and examine features of multiple morbidity by age-group.
3. Use Markov modelling methods to sequence the development of multiple morbidity over the lifespan.
4. Investigate whether health comorbidity data can be used to identify subgroups which are at higher risks of poor health outcomes using clustering analysis.
These analyses will provide new insights into health conditions in DS and help to understand the unique health needs of people with DS to inform policies and improve equity of care.
The development of health conditions and combinations of conditions found to be important for the study of multiple morbidity (Ho et al., 2022) and those associated with people with DS, including; congenital heart disease; dementia; hypothyroidism; epilepsy; obstructive sleep apnoea (OSA); haematological malignancy; cancer (solid tumour); chronic respiratory disease; asthma; obesity; cataract; glaucoma; peripheral vascular disease; thrombosis; ischemic heart disease; stroke/cerebrovascular disease; diabetes (both type 1 and type 2); kidney disease; hypertension; hypercholesterolaemia; osteoporosis/osteopenia; inflammatory bowel disease; ear disorders; constipation; other endocrine disorders; systemic autoimmune conditions; peripheral autoimmune conditions; dental inflammation; sleep disorder not including OSA; liver disease; psychiatric conditions (e.g. depression, anxiety disorders, psychosis). We will also examine mortality rates.
Asaad Baksh - Chief Investigator - King's College London (KCL)
Asaad Baksh - Corresponding Applicant - King's College London (KCL)
Andre Strydom - Collaborator - King's College London (KCL)
Li Chan - Collaborator - Queen Mary University of London
Martin Gulliford - Collaborator - King's College London (KCL)
Sarah Pape - Collaborator - King's College London (KCL)
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation