Unpaid carers are adults or children who provide care to another person who needs their help because of illness, or a disability. This study uses data from GP surgeries in England to understand how many unpaid carers are recorded as a ‘carer’ in their electronic patient record at their General Practice. This research aims to understand how well GP practices recognise and record when someone is a carer; and whether GP practices are improving over time in the number of unpaid carers they record as this is something policy makers would like to see happen. It also will explore if there are some groups of carers who are more likely to ‘miss out’ being recorded as an unpaid carer by their GP practice – for example this could include young carers, Black or Asian carers, or carers in areas of high social deprivation.
Background:
Our study investigates how well informal carers are recorded in routine primary care data. We will estimate the proportion of carers recorded as such in the data, whether this is more pronounced among certain groups of individuals than others, and changes over time. The outcomes of this study will highlight how well GP records capture information about carers, what inequities there might be and implications for future research and policy. This exploratory study will also help establish the feasibility of using CPRD data in future research in this area.
Methods
We will use Clinical Practice Research Data Link (CPRD) Aurum. Using relevant clinical codes, we will select:
1. All patients recorded as a carer, or a probable carer, at any time between 21st March 2011 and the latest available date
2. All patients registered in CPRD on 21st March 2021.
We will estimate point prevalence of caring on 21st March 2021 and compare to estimates from other sources, including the 2021 Census. We will also compare prevalence by patient characteristics (age, sex, socioeconomic deprivation, ethnicity and combinations of these). Patient ethnicity will be derived from GP records, linked Hospital Episode Statistics (Admitted Patient Care) and CPRD Aurum Ethnicity Record. Socioeconomic deprivation in the local area will be derived from linked Office for National Statistics (ONS) data. If we find that certain groups are less well-recorded then our evidence can be used to help change policy and practice for the recording of carers in GP data and ultimately provide them with better access to support. Linked ONS death registrations are the gold standard for mortality and using these means that our study will not be subject to biases arising from incomplete data on deaths occurring in England and Wales.
Our main quantitative outcomes are estimates for the point prevalence of informal carers recorded within GP data on 21st March 2021, overall and by patient demographic characteristics and practice.
Mai Stafford - Chief Investigator - The Health Foundation
Andrew Campbell - Corresponding Applicant - The Health Foundation
Arlene Gallagher - Collaborator - The Health Foundation
Charlotte Paddison - Collaborator - Nuffield Trust
Chris Sherlaw-Johnson - Collaborator - Nuffield Trust
Freya Tracey - Collaborator - The Health Foundation
Hannah Knight - Collaborator - The Health Foundation
Jay Hughes - Collaborator - The Health Foundation
Yannis Kotrotsios - Collaborator - The Health Foundation
Anna Powell - Collaborator - The Health Foundation
Eilis Keeble - Collaborator - Nuffield Trust
Folakemi Kola Daisi - Collaborator - The Health Foundation
Sebastien Peytrignet - Collaborator - The Health Foundation
HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;CPRD Aurum Ethnicity Record