Charting the COVID Long Haul Experience – A Longitudinal Exploration of Symptoms, Activity, and Clinical Adherence
arxiv(2024)
摘要
COVID Long Haul (CLH) is an emerging chronic illness with varied patient
experiences. Our understanding of CLH is often limited to data from electronic
health records (EHRs), such as diagnoses or problem lists, which do not capture
the volatility and severity of symptoms or their impact. To better understand
the unique presentation of CLH, we conducted a 3-month long cohort study with
14 CLH patients, collecting objective (EHR, daily Fitbit logs) and subjective
(weekly surveys, interviews) data. Our findings reveal a complex presentation
of symptoms, associated uncertainty, and the ensuing impact CLH has on
patients' personal and professional lives. We identify patient needs,
practices, and challenges around adhering to clinical recommendations, engaging
with health data, and establishing "new normals" post COVID. We reflect on the
potential found at the intersection of these various data streams and the
persuasive heuristics possible when designing for this new population and their
specific needs.
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