Department of Health Administration and Planning, Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz, Rio de Janeiro, Brazil.
Department of Health Administration and Planning, Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz, Rio de Janeiro, Brazil.
J Clin Epidemiol. 2024 Sep;173:111423. doi: 10.1016/j.jclinepi.2024.111423. Epub 2024 Jun 14.
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.
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.
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.
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.
长新冠（LC）是指急性 COVID-19 感染后持续存在的症状，可能持续数月或数年。LC 影响着全球数百万人，对生活质量、就业和社会参与产生重大影响。确保 LC 患者获得有效、以患者为中心的护理需要证据，这需要包容受该疾病影响的所有人。然而，调查研究经常代表性不足，无法反映出那些疾病表现最严重、种族和社会经济边缘化的人群。我们旨在描述一种患者参与的方法来开发一项调查，以为 LC 公共卫生保健提供信息，并评估其在巴西实施的情况，以促进不同 LC 患者的参与。
调查的开发是迭代进行的，通过包括 LC 患者在内的研究人员之间的跨学科合作实现，并基于 3 个指导原则：（1）基于证据；（2）对慢性病和研究参与的包容性、交叉性和以患者为中心的理解；（3）对医疗保健获取背景的敏感性。
我们合作的成果是一项纵向调查，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、家庭收入、卫生服务获取、利用和自付费用的影响。我们通过调查内容、仪器设计和管理展示了我们如何实施这 3 个原则。651 名具有不同 LC 症状、人口统计学和社会经济地位的参与者完成了调查。我们成功地包括了那些经历致残症状、黑人及混血参与者以及那些受教育程度和收入较低的参与者。
通过关注患者体验，我们新颖的、基于原则的方法成功地促进了 LC 调查研究中的公平、多样性和包容性。这些指导患者参与合作的原则具有广泛的可转移性。我们鼓励从事慢性病研究以及其他边缘化和不平等背景下的调查研究人员采用这些原则。
