Background Idiopathic pulmonary fibrosis (IPF) is a progressive, scarring disease of the pulmonary interstitium. Though emerging anti-fibrotic therapies (Pirfenidone and Nintedanib) are available for selected patients, the symptom burden remains high (breathlessness, cough) and disease trajectories are variable. Resultantly, NICE recommends incorporation of specialist palliative care (SPC) into IPF services.
Only designated IPF centres can prescribe anti-fibrotic medications. This approach generates risk of geographical healthcare inequalities.
IPF services for the North East and Cumbria are delivered by the Royal Victoria Infirmary in Newcastle upon Tyne. SPC support from Marie Curie Newcastle was incorporated in January 2016. We present an initial evaluation of our novel collaborative service.
Aims Aims were (1) to map the distribution of patients prescribed anti-fibrotic medications, and (2) to map the distribution of patients who were referred to clinic-based SPC.
Methods The postcodes of all patients with known IPF referred to SPC between January and November 2016 were collected retrospectively. These data were plotted onto a map of regional clinical commissioning groups (CCGs) to compare access.
Additionally, a database of patients prescribed anti-fibrotic medications during the same period was reviewed. A second map was produced showing access to these medications according to CCG.
Results 117 patients received anti-fibrotic medications. Male: Female 102:15, mean age 73. Geographical plotting reveals evidence of some regional disparity with respect to access to anti-fibrotic medication.
49 patients were referred to SPC (consultant based in the ILD clinic). Male: Female 35:14, mean age 75. Geographical plotting reveals a striking centralisation to the Newcastle-Gateshead CCG.
Conclusion Embedding SPC in a non-malignant clinic is possible. On evaluation, disparities are evident with respect to the prescription of anti-fibrotic medications, and more patently SPC input. This may reflect wider inequalities, impacting on patients who live far from the IPF centre. Exploration of contributing factors will be imperative.