Chronic respiratory diseases contribute significantly to morbidity and mortality. However, an effective and timely patient pathway can improve patient outcomes. This includes early and accurate diagnosis, along with timely and effective treatment. However, unlike other major diseases (for example, cancer), there are no clear time-limited targets for assessment, diagnosis, and treatment of respiratory diseases. Therefore, early and accurate diagnosis is not facilitated and monitored in the same way. Currently, there is little-to-no data on the patient pathway for major respiratory diseases. Likewise, there is no evidence on whether there are regional discrepancies in respiratory disease patient pathways, and whether there have been any major changes to the patient pathway over time.
Therefore, using primary and secondary electronic health records (including GP patient records and hospital episode statistics), this research aims to understand what the current patient pathway looks like, how this pathway differs by region, and how it may have changed over time. We aim to generate a piece of research that can form a baseline from which to monitor change. The British Lung Foundation Taskforce for Lung Health has proposed a theoretical model of events and timeframes in the respiratory disease patient pathway that it believes should serve as a blueprint for the patient pathway in practice. This research aims to provide evidence regarding the Taskforce for Lung Health’s recommendation for a clear and timely patient pathway.
Little is known about the current patient pathway for major respiratory diseases, despite the high morbidity and mortality associated with these diseases in the UK. The British Lung Foundation Taskforce for Lung Health have designed a theoretical time-specific model of the patient pathway to address the perceived delay between symptom onset, presentation to healthcare, and subsequent diagnosis and treatment. There is currently little evidence on the extent to which the current patient pathway aligns with the proposed model. This study, therefore, aims to establish the current patient pathway as a baseline, and the extent to which the current pathways align with the proposed model. This evidence would then stand to move the model towards being officially incorporated into mandated policy.
To address this problem, we will conduct a descriptive analysis using the Clinical Practice Research Datalink (CPRD) Aurum data, and Hospital Episode Statistics (HES)-linked data for admitted patient care, outpatients and accident and emergency data. We will include patients with a diagnosis of any of four major respiratory diseases, namely asthma, Chronic Obstructive Pulmonary Disease (COPD), Interstitial Lung Disease (ILD), and bronchiectasis. We will then trace their patient pathway from first presentation of respiratory disease symptoms (up to a maximum time of two years before diagnosis) and establish the patient pathway by means of the type of healthcare sought, the frequency of healthcare visits, the proportion of patients who followed guideline suggested pathways to diagnosis, and the timeframe involved from symptom onset to diagnosis and first treatment. We will establish these statistics for England and for English regions, as well as at three different time points (namely, 2008/2009, 2018/2019, and 2021).
The percentage and number of patients who presented at least one pre-defined respiratory symptom, for each disease; The percentage and number of patients whose care followed the diagnostic guidelines; The number of visits to primary and secondary care between first presenting with symptoms, and receiving a diagnosis, for each disease; The percentage of patients who received their diagnosis in either primary or secondary care, respectively, for each disease; The average amount of time between first presenting to primary or secondary care with respiratory symptoms, and receiving a diagnosis, for each disease; The average amount of time between receiving a disease diagnosis and first treatment.
The outcomes listed here will be assessed in patients with any of four major respiratory diseases [asthma, COPD (Chronic Obstructive Pulmonary Disease), ILD (Interstitial Lung Disease), and bronchiectasis], across three distinct time intervals (namely 2008/2009, 2018/2019, and 2021), as well as geographically (across all of England, and within English regions).
Jennifer Quint - Chief Investigator - Imperial College London
Anne Ioannides - Corresponding Applicant - Imperial College London
Ann Morgan - Collaborator - Imperial College London
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;Patient Level Index of Multiple Deprivation