Action for Pulmonary Fibrosis (APF) and the U.K. Royal College of General Practitioners (RCGP) have created and launched a training module to help doctors provide better care for patients with pulmonary fibrosis (PF).
The training will cover the signs and symptoms of PF, as well as where to refer suspected patients for further care.
“Idiopathic pulmonary fibrosis (IPF) is an uncommon condition and an average GP [general practitioner’s] practice may only look after a few patients with this incurable lung disease,” Helen Parfrey, PhD, an APF trustee and consultant respiratory physician at Royal Papworth Hospital, said in a press release. “We have worked with the RCGP (UK) to develop a state of the art eLearning course.”
The course will take physicians through the typical IPF patient journey to familiarize them with signs and symptoms, patient referrals, and anti-fibrotic therapies.
“This is a fantastic educational resource that we hope will empower GPs to have a better understanding of IPF and its current treatments as well as how they can best support patients living with this lung disease,” Parfrey said.
APF survey data suggest that such training is needed. The organization’s 2018 survey, “Giving Patients a Voice,” found that 35% of respondents had been misdiagnosed. This often occurred when a GP mistook PF for asthma, chronic pulmonary obstructive disease, or cardiac problems.
A further 54% of IPF patients surveyed reported waiting more than six months to be properly diagnosed and 20% reported waiting longer than two years. APF notes that this is especially problematic, given the average life expectancy of 3–4 years after diagnosis for this patient population.
“We need to raise GPs’ awareness of IPF, and provide them with new diagnostic technologies and invest in research if we are to ever to find a cure,” said Gisli Jenkins, PhD, professor at the University of Nottingham.
“We also need to reduce waiting times for appointments at specialist and general hospitals, so that people can be fast tracked into treatment, given these are more effective at an earlier stage in the condition,” he added.
APF’s “Listen to Our Lungs” campaign from PF Month 2019 led to the current collaboration. That campaign encouraged patients, their families, and support groups to contact doctors’ offices with information and resources to raise PF awareness and help them connect with local resources.
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