Publication date: Jun 14, 2024

Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may endure 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 socio-economically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC healthcare, 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 three 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 healthcare 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 three principles through survey content, instrument design, and administration. 651 participants with diverse LC symptoms, demography, and socio-economic 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.

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