Understanding the diagnosis and prognosis of the presentation of breathlessness in adults from primary care

Study type
Protocol
Date of Approval
Study reference ID
20_075
Lay Summary

Breathlessness is a normal response to exertion and establishing when the degree of breathlessness is abnormal for the level of exertion can be challenging for GPs. There are many causes of breathlessness, and it can be difficult for GPs to find the cause as there are no clearly defined investigative pathways. Many long term heart and lung conditions cause breathlessness on exertion, and these conditions are associated with reduced life expectancy and frequent hospital admission. Whether delays in diagnosis, and therefore treatment, results in worse long-term outcomes is unknown. Using the Clinical Practice Research Datalink (CPRD) we plan to describe adults presenting with a first-recorded symptom of unexplained breathlessness recorded by a GP in primary care at baseline, describe investigations performed and diagnoses made within 2-years from initial symptom, and to predict the risk of future long-term healthcare outcomes of hospitalisation and mortality based on investigations, diagnoses, and accrued comorbidities and multi-morbidities. This will allow us to understand whether the time to diagnosis from when an adult first presents with breathlessness affects how long they live or whether, when and how many times they are admitted to hospital. The protocol includes a matched cohort study, which will compare long-term health outcomes of mortality and hospitalisation for adults presenting with breathlessness compared to adults not presenting with breathlessness and with no known chronic heart or lung problem.

We propose additional descriptive analyses to investigate the effect of the functional impact of breathlessness on length of stay of future unplanned hospital admission.

Technical Summary

Breathlessness is a common presenting symptom for serious long-term conditions such as chronic heart and lung diseases; however, there are no clear guidelines how to investigate breathlessness in primary care and understand whether delays in diagnosis result in worse future outcomes. We propose to investigate adults over the age of 18 years presenting with breathlessness for the first time during 2007 – 2017 using patient data from the CPRD with data linkage to HES, ONS mortality data and IMD2010 neighbourhood deprivation data. We aim to 1) describe demographics at baseline for adults presenting with a first-recorded symptom of breathlessness, and gain insight into diagnostic pathways by describing investigations performed and whether this contributes to the number of diagnoses made, or comorbidities and multi-morbidities accrued 2-years after initial presentation, 2) understand whether time to diagnosis affects the long-term outcomes of all-cause mortality and hospitalisation and 3) predict the risk of the same long-term outcomes for adults presenting with breathlessness compared to adults not presenting with breathlessness by conducting a matched cohort study. The Adjusted Clinical Groups (ACG) system is a well-established and documented patient population case-mix adjustment software which produces a range of risks relative to patient output. Using the ACG algorithm and the Charlson Comorbidity Index, we will interrogate adults at baseline to determine whether they have an incident (unexplained) or prevalent (explained) presentation with breathlessness and can categorise patients according to morbidity burden, and then again at two years to investigate accrued diagnoses following an incident presentation.

We propose to further investigate the association between severity of breathlessness when patients present to their general practitioner and risk of future unplanned hospital admissions and length of stay .

Health Outcomes to be Measured

Descriptive study
- Assess how many adults present with unexplained breathlessness and describe their co-morbidities at baseline
- Describe the number of tests and pattern of tests performed within 6 months and 2 years from presentation with breathlessness
- Describe the time to diagnosis from presentation with breathlessness
- Describe accrued diagnoses from presentation with breathlessness using the Adjusted Clinical Groups (ACG) grouper outputs

Prognosis study
- Hospitalisation (indicated by hospitalisation date from Hospital Episode Statistics (HES) hospital data)
- Mortality (indicated by a death date from Office for National Statistics (ONS) mortality data)

Further descriptive analyses
- Length of time between first record of breathlessness, measured using the Medical Research Council (MRC) breathlessness scale, and the first unplanned hospital admission during the study period of 2007 – 2017.
- Inpatient length of stay for the first unplanned admission after first record of breathlessness within the study period.

Collaborators

Rachael Evans - Chief Investigator - University of Leicester
Rachael Evans - Corresponding Applicant - University of Leicester
Alex Bottle - Collaborator - Imperial College London
Claire Lawson - Collaborator - University of Leicester
Daniel Lozano-Rojas - Collaborator - University of Leicester
David Currow - Collaborator - Not from an Organisation
Diana Ferreira - Collaborator - University of Wollongong
Emily Petherick - Collaborator - Loughborough University
Harini Sathanapally - Collaborator - University of Leicester
Irina Kinchin - Collaborator - Trinity College Dublin
Jennifer Quint - Collaborator - Imperial College London
Kamlesh Khunti - Collaborator - University of Leicester
Kimon Ntotsis - Collaborator - University of Leicester
Magnus Ekstrom - Collaborator - Lund University
Michael Steiner - Collaborator - Glenfield Hospital
Slavica Kochovska - Collaborator - University of Wollongong
Vanessa Brunelli - Collaborator - Not from an Organisation

Former Collaborators

David Currow - Collaborator - Not from an Organisation
Diana Ferreira - Collaborator - University of Wollongong
Daniel Lozano-Rojas - Collaborator - University of Leicester
Harini Sathanapally - Collaborator - University of Leicester
Irina Kinchin - Collaborator - Trinity College Dublin
Kimon Ntotsis - Collaborator - University of Leicester
Magnus Ekstrom - Collaborator - Lund University
Matt Richardson - Collaborator - NIHR Leicester Biomedical Research Centre
Alex Bottle - Collaborator - Imperial College London
Slavica Kochovska - Collaborator - University of Wollongong
Vanessa Brunelli - Collaborator - Not from an Organisation

Linkages

HES Accident and Emergency;HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation