The aim of this survey was to capture the current “state of play” with regard to ILD services, with an emphasis on idiopathic pulmonary fibrosis (IPF), in the UK.Methods
The BTS Specialist Advisory Group emailed a survey to 260 clinicians. Respondents were advised to collect data prospectively for 1 month (late 2010/early 2011) before completing it.Results
120 responses were obtained, (England-96, Scotland-16, Wales-6, Northern Ireland-2), total catchment population 37.3 million, number of full-time consultants 3 (1–15). *50% of centres had a “lead” ILD consultant, 57% ran an ILD clinic and, of those centres currently without an ILD clinic, 70% anticipated setting one up in the next 5 years. For patients with all types of ILD the estimated number of new patients seen at clinic each month was 6 (1–75). *The percentage of new patients with IPF (options “<25%”, “25–50%”, “50–75%” or “>75%”) was estimated at 18%, 36%, 27% and 18% respectively. For all ILD patients, the number of return patients seen at clinic in a month was 25 (1–300). *Only 5% of respondents were “very confident” about these figures (based on audit/registry) with 62% expressing “low confidence”. HRCT reporting was performed by “Pulmonary radiologists”/“Pulmonary radiologists with a specific ILD interest” in 48% and 36% respectively. 47% of centres did not have an ILD-multidisciplinary meeting (MDM), and for those that did, 32% held them monthly. Access to an ILD Specialist Nurse, ambulatory oxygen, pulmonary rehabilitation, palliative care and smoking cessation were 26% 93%, 81%, 93% and 97% respectively. 64% had not recruited into IPF clinical trials and 68% had no registry/database[n1]. “Triple” therapy continued to be prescribed “frequently”, prednisolone (55%), azathioprine (49%), N-acetylcysteine (45%). The reported preferred model of care for ILD patients was “local” (51%), “network” (45%) and “centre” (4%). *Median/range.Conclusions
There is a wide variation in current practice, with almost half of all respondents not holding a MDM, despite BTS/ERS/ATS guidelines. Our survey has implications for the delivery of ILD care in the UK and should support the BTS in developing Quality of Care standards.