The concerns of patients with the rare lung disease primary ciliary dyskinesia (PCD) are being used to improve guidelines for doctors, so that more patients can be diagnosed earlier.
PCD is a rare genetic disorder affecting the tiny hair-like cilia in the lungs that keep our airways clear, leaving patients with a constant cough and prone to recurrent chest infections from a young age .
An international study led by Professor Jane Lucas from the NIHR Respiratory Biomedical Research Unit has highlighted the challenges that PCD patients face getting referred for diagnostic tests.
Their results, published in The European respiratory journal, will be used by the European Respiratory Society (ERS) Task Force to develop guidelines for doctors diagnosing PCD, enabling better diagnosis for future patients.
Drawing on the experiences of PCD patients, the team revealed a great need for better awareness of the condition among doctors, with 35% of survey respondents reporting visiting their doctor at least 40 times with PCD symptoms before they were referred for diagnostic tests.
To obtain these patient viewpoints, the researchers created an online survey in nine different languages, completed by 365 patients in 25 countries, as well as conducting interviews with patients and parents.
The hope is that, by using these patient perspectives to inform future guidelines, doctors will be better able to recognise PCD symptoms, so patients can get a diagnosis and start treatment sooner.
Posted on Thursday 22 September 2016