Feedback regarding the diagnosis of IPF
HCPs, including GPs, radiologists, pathologists and pulmonologists, lack awareness of IPF and how to diagnose it False diagnoses with other respiratory disorders are common Awareness of IPF guidelines is often poor and access to diagnostic testing is not always straightforward Referral to specialists is often significantly delayed
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Feedback regarding access to treatment
Supplementary oxygen is not always available to those most in need Age restrictions for lung transplantations exclude many healthy, viable patients Pulmonary rehabilitation is not always available or easily accessed by patients Reimbursement for treatment is limited in some countries The availability of pirfenidone is limited in some countries
Feedback regarding holistic care
Multidisciplinary care teams comprising of radiologists, pulmonologists, specialist nurses and physiotherapists are lacking Emotional and psychological support for patients with IPF and their families is insufficient
Feedback regarding the availability of information on IPF
Lack of knowledge among HCPs regarding IPF directly impacts the knowledge and understanding of patients Patients with IPF lack sufficient information on the disease and what treatments are available PGs play a huge role in providing disease and treatment information to patients with IPF Greater awareness of IPF as a chronic, debilitating and lethal disease is required among the general public The status of IPF as a rare disease is under-recognised by policymakers and healthcare bodies, hindering the availability of funding for IPF research and centres of excellence
Feedback regarding palliative care
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