2016-01-31
European IPF Patient Charter: Unmet needs and a call to action for healthcare policymakers
Publication
Publication
The European Respiratory Journal , Volume 47 - Issue 2 p. 597- 606
Patient advocacy groups play an important role in supporting patients with chronic diseases
and promoting better care. The aim of this patient–physician initiative was to gather perceptions from
European idiopathic pulmonary fibrosis (IPF) patient advocacy groups regarding inequalities and unmet
needs in IPF care, in order to develop a Patient Charter to advocate for better care.
In total, 11 European patient advocacy groups were interviewed regarding the care of patients with IPF
in their countries. Interview feedback was presented to a Working Group including patient advocacy group
representatives and IPF specialists; key areas of agreement were developed into the European IPF Patient
Charter.
The interviews identified five key themes that fed into the final Charter: the need for improved
diagnosis, treatment access, holistic care, disease awareness and palliative care. The final Charter was
endorsed by patient advocacy groups and presented to 26 Members of the European Parliament in
September 2014. It has received >8900 signatures to date.
This patient–physician initiative highlights the inequalities and unmet needs in IPF care across Europe,
and demonstrates how this insight can inform the development of a Patient Charter, designed as a call to
action for healthcare policymakers to drive improvement in European IPF care.
Additional Metadata | |
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doi.org/10.1183/13993003.01204-2015, hdl.handle.net/1765/91376 | |
The European Respiratory Journal | |
Organisation | Department of Pulmonology |
Bonella, F, Wijsenbeek-Lourens, M.S, Molina-Molina, M, Duck, A, Mele, R, Geissler, K, & Wuyts, W.A. (2016). European IPF Patient Charter: Unmet needs and a call to action for healthcare policymakers. The European Respiratory Journal, 47(2), 597–606. doi:10.1183/13993003.01204-2015
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