Idiopathic pulmonary fibrosis or IPF is a chronic lung disease characterised by scarring of the lungs. People with this disease become increasingly breathless and eventually lose their ability to undertake day-to-day activities. Although the disease can take a long time to develop, once diagnosed prognosis is often poor - similar to that of several cancers - with many only surviving for 3–5 years. Although there are now some drug treatments for pulmonary fibrosis, they are usually only prescribed when people have quite advanced disease. Other treatments for breathlessness such as exercise classes (pulmonary rehabilitation) are available, and these have been shown improve quality of life of people with pulmonary fibrosis. Palliative end-of-life care services, which offer symptom control and social and psychological support, have also been shown to help people cope with this life-limiting disease. Although we don’t know for sure how many patients are offered these types of services, we suspect that across the UK access is poor and referral rates are low, lower than for other lung diseases and certainly for cancer. It is also not known if certain people are more likely to be referred than others. By using information from GP databases, we will find out how many patients with pulmonary fibrosis have been referred to pulmonary rehabilitation and palliative care services and whether this has improved over time. We hope that through this research, we will develop a better understanding of scarring lung diseases so that we can improve care for patients.
It has been suggested that UK incidence of idiopathic pulmonary fibrosis (IPF) is increasing, with some studies indicating that incidence has increased by 5% per year over the past decade. Once diagnosed, prognosis is often poor; average survival times iare just 3 years, which is similar to that of some cancers. There is no cure for IPF, but new anti-fibrotic drugs have been shown to slow progression of the disease. While anti-fibrotics can slow the rate of lung function decline in people with IPF, their effect on symptom burden (e.g. breathlessness) and quality of life is modest. Moreover, not all patients are eligible for anti-fibrotic treatment.
Evidence is emerging that referral to pulmonary rehabilitation and palliative care services can help to improve quality of life and symptom burden in people with IPF. While there are few UK data on referral and use of pulmonary rehabilitation and palliative care services in this patient population, we suspect it is low, lower than for other lung diseases such as COPD and cancer. Using CPRD Aurum data linked with HES outpatient data, we will describe referral patterns in people diagnosed with IPF over the last 10 years, making comparisons with rates in people with COPD and/or lung cancer. We will use Cox regression models to determine which factors are associated with referral to pulmonary rehabilitation and palliative care support services (separately). If numbers allow, we will investigate whether completing pulmonary rehabilitation reduces the risk of a subsequent hospitalisation and whether co-diagnosis of lung cancer is associated with an earlier referral for palliative care support. This work will provide basic data on referral rates and whether these have improved over time; it will also identify which patient characteristics are associated with referral – or more importantly from the perspective of informing service needs – non-referral.
- Referral rates for pulmonary rehabilitation and palliative care over time.
- Factors associated with referral to pulmonary rehabilitation and palliative care services
Jennifer Quint - Chief Investigator - Imperial College London
Ann Morgan - Corresponding Applicant - Imperial College London
Abdul-Hakeem Khan - Collaborator - Imperial College London
Peter George - Collaborator - Royal Brompton Hospital
HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation