European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers

Abstract

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. @ERSpublications European IPF Patient Charter details unmet needs in IPF and presents a call to action for healthcare policymakers

Idiopathic pulmonary fibrosis: another step in understanding the burden of this disease

“…In both cases, patients with IPF did worse than those with chronic obstructive pulmonary disease, highlighting the clear burden of the disease on patients. This supports the work of the European IPF Patient Charter in highlighting unmet needs of people with IPF [26]. Overall, the study provides a further piece in the IPF epidemiology jigsaw, standing out as one of the few "national" database studies from a western country, and revealing a higher incidence of disease than elsewhere.…”

Identifying Barriers to Idiopathic Pulmonary Fibrosis Treatment: A Survey of Patient and Physician Views

“…Results from other surveys suggest that the majority of patients want to be provided with more information about IPF, including its progression and treatment [33,34]. The European IPF Patient Charter calls for "comprehensive and high-quality information about IPF, including its treatment" to be made available to patients [35]. This is reiterated by Patient Charters from Ireland, the UK, and Canada [31,36,37].…”

[Nintedanib for the treatment of idiopathic pulmonary fibrosis in Italy]

“…La Carta Europea dei pazienti con IPF, discussa e redatta dalle associazioni dei pazienti più attive in ambito europeo, è volta a sensibilizzare i governi, le istituzioni sanitarie, le aziende farmaceutiche e l'opinione pubblica sulle criticità legate alla malattia ed agli aspetti organizzativi inerenti alla sua gestione, nonché ai bisogni insoddisfatti correlati alla malattia. In particolare la Carta Europea ha individuato cinque temi chiave [78]: 1. la necessità di una diagnosi più rapida e di un più facile accesso ai centri specialistici di riferimento; 2. l'urgenza di assicurare a tutti i pazienti un accesso a tutte le terapie farmacologiche innovative ed efficaci ed al trapianto di polmone; 3. la possibilità per tutti i pazienti di ricevere un approccio globale e integrato alla terapia, comprendente, oltre ai farmaci, anche la riabilitazione respiratoria, il trattamento delle comorbidità, la disassuefazione dal fumo, l'ottimizzazione dell'ossigenoterapia, l'educazione nutrizionale ed il supporto psicologico e sociale; 4. l'importanza di ricevere informazioni chiare e dettagliate sulla malattia, la sua evoluzione e tutte le cure disponibili; 5. la possibilità di ricevere cure palliative, per vivere con dignità le fasi finali della malattia.…”