Trapman Lian, Zwakman Marieke, de Graaf Everlien, Dijksman Lea M, Grutters Jan C, Teunissen Saskia C C M
ILD Center of Excellence, Department of Pulmonology, St Antonius Hospital, Nieuwegein, Netherlands.
University of Applied Sciences Utrecht, Utrecht, The Netherlands.
Am J Hosp Palliat Care. 2025 Apr;42(4):372-381. doi: 10.1177/10499091241267914. Epub 2024 Oct 14.
Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP).
To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF.
A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed.
The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns.
The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient.
特发性和已知病因的进行性肺纤维化（IPF/PPF）是相对罕见的肺部疾病，诊断后的生存时间有限。建议对姑息治疗予以切实关注。最佳护理需要协作，以便与患者及其家属确定未来医疗和护理的目标及偏好，从而推动（或促成）预先护理计划（ACP）。
了解与IPF/PPF患者对话后所描述的ACP关键要素的出现频率。
一项回顾性审计纳入了2017年12月至2020年12月期间死亡的IPF/PPF患者的病历。基于患者联合会指南和更广泛的文献开发了一个数据提取模型，最终包含14个关键要素。随后进行了内容分析。
60例患者的病历显示，57例（95%）记录了ACP的一个要素。没有一份病历包含ACP的所有14个关键要素。最常记录的ACP要素是：疾病知识、治疗和护理目标以及恐惧和担忧。
在间质性肺病患者护理中，ACP缺乏结构性实施，导致医疗保健专业人员（HCP）仅就ACP的一些要素进行了对话。所记录的这些内容往往较为肤浅，反映的是HCP的观点。需要实施ACP对话和结构化记录，以便更好地了解患者的愿望和偏好。
