From the authors
- M. Toshner,
- J. Suntharalingam,
- J. Pepke-Zaba and
- D. Jenkins
We thank M.K. Johnston and co-workers for their further work on national referral rates of patients with chronic thromboembolic pulmonary hypertension (CTEPH) in the UK. In our original paper 1, we offered the relative lack of specialist centres over a large geographical area as an explanation for the lower referral rates in Scotland. We find their further analysis of Scottish referral patterns to be a useful addition and note their conclusions that pulmonary endarterectomy referrals have dramatically increased in parallel to the activity of their unit to be convincing. Importantly they include data from 2007–2008, which was not collected in our original cohort and this additional data clearly shows an increased referral rate. This is in line with our central hypothesis that referrals increase with local experience and awareness of the disease and operation. We did not provide an individual year on year breakdown as the numbers would be too small for statistical analysis; however, we agree that those regions with lower referral rates in the early years are now referring more.
The original analysis included only those patients who were operated on in an attempt to prevent bias, in particular to our own unit. As it is policy at Papworth Hospital (Cambridge, UK) for all CTEPH patients to be discussed at our multidisciplinary team meetings this would invariably have led to our technically operable capture being higher than other units. As the service has expanded we have encouraged all centres to refer all patients with CTEPH for discussion.
We therefore still believe that the actual operable disease is the fairest end-point for this analysis, and ultimately is also the most important measure of the implementation of the national programme.
Statement of interest
None declared.
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