Intellectual/ learning disabilities (ID/ LD) refer to impairments in intellectual functioning (an IQ <70) with deficits in adaptive functioning, with onset during the developmental period. People with intellectual disabilities (ID) die younger than people without ID, on average, up to 20 years earlier, and often from reasons considered avoidable if they were managed well in community health care settings. Reducing the risk of early death among people with ID is a priority area of research to address the unequal health experienced by this population. Access to good quality and timely healthcare is vital for optimal health. Despite this, people with ID face barriers in accessing health services, compounded by communication difficulties, and organizational and social support limitations. They receive poorer management of their long-term conditions in primary care settings. They also experience more avoidable hospital admissions, which may be an indicator of lower quality primary care. No studies have quantified the potential influence of the quality and access to primary health care services among people with ID in relation to premature death. This research will address whether poor quality (measured by national indicators of good practice in primary care from the Quality and Outcomes Framework; QOF) and access (measured by consultation factors, including number, length and continuity of primary care consultations) to primary health care services is related to an increased risk of deaths considered amenable to health care. Study findings will contribute towards policy guidance to improve NHS practice around primary care management of people with ID.
Background:
There is currently limited information on primary care health care quality, access or utilisation in people with intellectual disabilities (ID) and no research to date has focussed on the relationship to amenable mortality compared to the general population.
Aim:
To quantify how primary care quality and access impacts on avoidable mortality in people with ID, including person level characteristics as potential covariates.
Design:
A longitudinal cohort study which will identify a cohort of individuals with ID with a matched general population reference cohort.
Cohort:
Individuals with ID aged 0-75 registered for at least six months in CPRD participating practices during 2006-2020 and a matched (sex, year of birth, deprivation) reference cohort (3 matches per person with ID) without ID.
Variables:
Independent variables
Quality and accessibility of primary care will be investigated using a mixture of Quality and Outcomes Framework (QOF) and non-QOF indicators, including the management of diagnosed QOF conditions measured from clinical indicators as well as consultation factors (e.g. frequency, length and continuity of consultations).
Outcome variables
Deaths from avoidable causes (amenable/ preventable deaths)
Other variables (not mentioned above)
Age (0-9, 10-18, 19-24, 25-44, 45-64, 65-74); gender; deprivation (living situation domains); severity of ID; living situation; ethnicity (white, Asian, Chinese, black, mixed/other, unknown); diagnosis of any ambulatory care conditions in GP records.
Statistical methods:
Survival analysis. Stratified (by sex, birth year group, and deprivation) Cox proportional hazards (PH) regression models, testing for both a) multiplicative and b) additive interactions.
Sensitivity analyses:
As uncertainty exists in all aspects above, pre-specified sensitivity analyses will be conducted.
Impact:
Strengthen policy guidance to improve NHS practice around primary care management of people with ID through changes in indicators in the QOF or through informing local enhanced services (LESs) on evidence based best practice in primary care.
Primary outcomes:
death (all cause)
death (avoidable causes)
o amenable causes
o preventable causes
Secondary outcomes:
primary health care access (consultation factors; frequency, length and continuity of care)
primary health care quality (QOF)
Laura Hughes-McCormack - Chief Investigator - University of Glasgow
Laura Hughes-McCormack - Corresponding Applicant - University of Glasgow
- Collaborator -
Bhautesh Jani - Collaborator - University of Glasgow
Chris Hatton - Collaborator - Lancaster University
Daniel Mackay - Collaborator - University of Glasgow
Donald Lyall - Collaborator - University of Glasgow
Gillian Smith - Collaborator - University of Glasgow
Gyles Glover - Collaborator - Public Health England
Iain Carey - Collaborator - St George's, University of London
Jill Pell - Collaborator - University of Glasgow
Maria Truesdale - Collaborator - University of Glasgow
Srinivasa Vittal Katikireddi - Collaborator - University of Glasgow
ONS Death Registration Data;Patient Level Index of Multiple Deprivation Domains;Practice Level Index of Multiple Deprivation