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.

译文

患者倡导团体在支持慢性病患者和促进更好的护理方面发挥着重要作用。这项患者-医生倡议的目的是收集欧洲特发性肺纤维化 (IPF) 患者倡导团体对IPF护理中的不平等和未满足的需求的看法,以便制定一项患者宪章来倡导更好的护理。总的来说,11个欧洲患者倡导团体接受了有关其国家IPF患者护理的采访。采访反馈被提交给包括患者倡导小组代表和IPF专家在内的工作组; 协议的关键领域被纳入《欧洲IPF患者宪章》。访谈确定了纳入最终宪章的五个关键主题: 改善诊断的需求,治疗机会,整体护理,疾病意识和姑息治疗。最终宪章得到了患者倡导团体的认可,并提交给了2014年9月欧洲议会的26名成员。迄今为止,它已收到> 8900个签名。该患者-医生倡议突出了欧洲IPF护理中的不平等和未满足的需求,并展示了这种见解如何为制定患者章程提供信息,该章程旨在呼吁医疗保健政策制定者采取行动,以推动欧洲IPF护理的改善。

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