摘要
目的:调查我国动脉型肺动脉高压(PAH)患者生存现状,为改善患者生活质量提供数据支持。方法:在2020年12月9日至2021年3月31日期间,采用第一阶段定性访谈和第二阶段定量问卷的方法对PAH患者进行调研。定性访谈为电话或现场访谈;定量问卷是通过PAH患友互助组织的微信公众号以调研链接和二维码的方式发放问卷填写。对确诊时间、病因、生活质量评估及经济状况等方面进行分析对比。结果:共完成33例PAH患者线下访谈和461例PAH患者有效问卷。461例有效问卷PAH患者来自我国30个省(直辖市/自治区),其中女性343例(74.4%),平均年龄(36.3±11.7)岁,235例(51.0%)为先天性心脏病相关性PAH。461例患者从出现症状到确诊的中位时间为183(30,915)d;在375例进行了初诊WHO功能分级的患者中,Ⅲ级167例(44.5%)、Ⅳ级46例(12.3%);从确诊到启动靶向药物治疗的中位时间为29(0,365)d;仅146例(31.7%)患者规律复诊。先天性心脏病相关性PAH患者诊治延迟最为明显,从出现症状到确诊中位时间为242(0,1461)d,从确诊到启动靶向药物治疗中位时间为31(0,2738)d。先天性心脏病相关性PAH患者对药物和随访的依从性最差,仅62例(26.4%)患者能坚持用药并规律复诊。对2006年及以前、2007~2017年、2018年及以后3个时段确诊的PAH患者状况分析显示,2018年及以后从确诊到启动靶向药物治疗的中位时间明显缩短,规律复诊情况也明显改善(P均<0.001)。我国PAH患者的SF-36评分与肿瘤患者相当,其在情感职能、社会功能和精神健康方面的评分远低于美国PAH患者。结论:我国PAH诊断延误且治疗不规范,PAH患者心理和经济负担严重,生活质量严重受损。
Objectives:To investigate the survival status of patients with pulmonary arterial hypertension(PAH)in China and to obtain clinical evidence to further improve the quality of life of these patients.Methods:The present study consisted of qualitative interviews(stageⅠ)and quantitative questionnaires(stageⅡ)among patients with PAH,and the study was performed from 9th December 2020 to 31st March 2021.The qualitative interviews were conducted via telephone or on-site interviews.The quantitative questionnaires were distributed via the WeChat official accounts of the patients’mutual-help organizations.Comparisons were performed based on disease duration,etiologies,quality of life,economic status,etc.Results:A total of 33 on-site interviews and 461 valid questionnaires were completed in patients with PAH.The 461PAH patients were recruited from 30 provinces(municipalities/autonomous regions)in China.Among them,343(74.4%)were female,the mean age was(36.3±11.7)years,and 235(51.0%)patients were diagnosed with congenital heart diseaseassociated PAH(CHD-PAH).The median time from the onset of symptoms to confirmed diagnosis was 183(30,915)d.Of 375 patients who underwent initial classification at the time of diagnosis,167(44.5%)patients met WHO function classⅢand 46(12.3%)patients met WHO function classⅣ.The median interval from confirmed diagnosis to initiation of targeted therapy was 29(0,365)days,and only 146(31.7%)patients received regular follow-up.Delay in diagnosis was more often for patients with CHD-PAH.The median time from the onset of symptoms to confirmed diagnosis was 242(0,1461)d for patients with CHD-PAH.The median interval from confirmed diagnosis to initiation of targeted therapy was 31(0,2738)d for patients with CHD-PAH.Only 62 patients(26.4%)had good compliance for medicine and follow-up in patients with CHD-PAH,which was the worst among the investigated PAH subgroups.The patients were divided into 3 groups according to the time of confirmed diagnosis(before 2006,2007-2017,after 2018).The median time from diagnosis to initiation of targeted therapy and the compliance for follow-up were significantly improved in patients of“after 2018”group as compared to other two groups(all P<0.001).The SF-36 scores of Chinese patients with PAH were comparable to patients with tumor.The scores in emotional functioning,social functioning,and mental health of Chinese patients with PAH were much lower than those of American patients with PAH.Conclusions:In China,the diagnosis of PAH is often delayed and related treatment is insufficient.The psychological and financial burdens of patients with PAH are heavy and their quality of life is severely damaged.
作者
罗勤
柳志红
奚群英
纪求尚
熊长明
翟振国
杨媛华
刘春丽
顾虹
李梦涛
王琦光
应可净
谢育梅
万霞
安辰鸿
黄宁
段安琪
晏露
国家心血管病专家委员会右心与肺血管病专业委员会
LUO Qin;LIU Zhihong;XI Qunying;JI Qiushang;XIONG Changming;ZHAI Zhenguo;YANG Yuanhua;LIU Chunli;GU Hong;LI Mengtao;WANG Qiguang;YING Kejing;XIE Yumei;WAN Xia;AN Chenhong;HUANG Ning;DUAN Anqi;YAN Lu;behalf of the Right Heart and Pulmonary Vascular Diseases Specialty Committee of the National Committee of Cardiologists
出处
《中国循环杂志》
CSCD
北大核心
2022年第11期1111-1115,共5页
Chinese Circulation Journal
基金
国家心血管病专家委员会右心与肺血管病专业委员会。
