目的:长型COVID(LC)是指急性COVID-19感染后的持续症状,可能会持续数月或数年。LC影响全球数百万人,对生活质量有重大影响,employment,和社会参与。确保获得有效、以患者为中心的LC护理需要证据,基于受该条件影响的人的包容性代表。然而,调查研究经常低估了患有最严重致残疾病的人以及在种族和社会经济上被边缘化的群体。我们旨在描述一种患者参与的方法来开发一项调查,以告知公共LC医疗保健,并评估其在巴西不同LC患者参与方面的实施情况。
方法:调查开发是迭代的,通过研究人员之间的跨学科合作,包括与LC生活的人,并基于三个指导原则:(1)循证;(2)包容性,相交,以及以患者为中心对慢性病和研究参与的理解;(3)对医疗保健服务背景的敏感性。
结果:我们合作的结果是一项纵向调查,使用问卷调查评估:LC症状;其临床和功能演变;以及对生活质量的影响,家庭收入,卫生服务准入,利用率,和自付费用。我们通过调查内容说明了我们如何实施我们的三个原则,仪器设计,和行政。651名具有不同LC症状的参与者,人口统计学,和社会经济地位完成了调查。我们成功地纳入了出现致残症状的参与者,黑人和混合种族参与者,以及那些教育程度和收入较低的人。
结论:以患者体验为中心,我们的小说,基于原则的方法成功地促进了公平,多样性,并纳入LC调查研究。这些指导患者参与协作的原则具有广泛的可转移性。我们鼓励从事慢性病和其他边缘化和不平等背景的调查研究人员采用它们。
OBJECTIVE: Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may persist for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socioeconomically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC health care and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil.
METHODS: Survey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in 3 guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of health-care access.
RESULTS: The product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our 3 principles through survey content, instrument design, and administration. Six hundred fifty-one participants with diverse LC symptoms, demography, and socioeconomic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income.
CONCLUSIONS: By centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.