Graham Camilla S, Bisson Brianna, Shore Jessica, Pardy Emily, Salisbury Frank, Lancaster Lisa, Kulkarni Tejaswini
PureTech Health, Boston, MA, USA.
Seaport Therapeutics, Boston, MA, USA.
BMC Pulm Med. 2025 May 8;25(1):221. doi: 10.1186/s12890-025-03689-8.
The antifibrotic therapies, pirfenidone and nintedanib, have been approved since 2014 for idiopathic pulmonary fibrosis (IPF), but in the United States only a quarter of people living with IPF have ever been exposed to an antifibrotic. Understanding the burden and consequences of the disease and its treatment from the perspective of people living with IPF may facilitate improved education and outreach for them and their providers.
Qualitative interviews with people living with IPF explored perspectives on the diagnosis and management of IPF. Transcripts were analyzed to derive themes and topics, and illustrative quotes were selected for presentation. Data were developed into a 74-item on-line survey taken by additional people living with IPF. Quantitative survey data were analyzed with 95% confidence intervals and Z tests.
Sixteen people living with IPF underwent qualitative interviews. Direct quotes were used to derive and support themes, and survey stimuli are presented. Ninety additional people living with IPF responded to the on-line survey. 52% of survey participants were male, 54% used supplemental oxygen, and 34% had never been exposed to an antifibrotic. Top sources of information about their IPF diagnosis were their healthcare provider, the internet, and support groups. Most participants had one or more of shortness of breath, fatigue, or cough and over 40% described these symptoms as very burdensome. The most common reason for not starting an antifibrotic was, "I am waiting to start treatment until my symptoms worsen." For those treated with antifibrotics, (78%) agreed with a statement that their antifibrotic gives them hope even though around 90% had at least one side effect.
Most individuals living with IPF experienced significant challenges due to their disease and its treatment, that substantially impacted their quality of life. A better understanding of these challenges can facilitate patient-centered and shared decision-making, ultimately enhancing outcomes and satisfaction for people living with IPF.
抗纤维化疗法吡非尼酮和尼达尼布自2014年起被批准用于特发性肺纤维化（IPF）的治疗，但在美国，仅有四分之一的IPF患者曾接受过抗纤维化治疗。从IPF患者的角度了解该疾病及其治疗的负担和后果，可能有助于改善针对他们及其医疗服务提供者的教育和宣传工作。
对IPF患者进行定性访谈，探讨他们对IPF诊断和管理的看法。对访谈记录进行分析以提炼主题和话题，并选取具有代表性的引述进行展示。将这些数据整理成一份包含74个条目的在线调查问卷，供其他IPF患者填写。对定量调查数据进行95%置信区间和Z检验分析。
16名IPF患者接受了定性访谈。使用直接引述来提炼和支持主题，并展示调查刺激因素。另外90名IPF患者对在线调查问卷做出了回应。52%的调查参与者为男性，54%使用补充氧气，34%从未接触过抗纤维化药物。关于其IPF诊断的主要信息来源是他们的医疗服务提供者、互联网和支持小组。大多数参与者有呼吸急促、疲劳或咳嗽中的一种或多种症状，超过40%的人将这些症状描述为非常沉重的负担。未开始使用抗纤维化药物的最常见原因是“我要等到症状恶化才开始治疗”。对于接受抗纤维化药物治疗的患者，78%同意这样一种说法，即他们的抗纤维化药物给了他们希望，尽管约90%的人至少有一种副作用。
大多数IPF患者因其疾病及其治疗面临重大挑战，这对他们的生活质量产生了重大影响。更好地了解这些挑战有助于以患者为中心的共同决策，最终改善IPF患者的治疗效果和满意度。
