Long COVID (Post COVID‑19 condition) presents considerable challenges for patients, healthcare providers and policy makers, with millions of people still suffering from this condition five years after the pandemic began (Espinosa Gonzalez and Suzuki, 2024[1]). Patients with Long COVID experience a wide range of persistent symptoms that impact their physical and mental health, ability to work, care for their families, and engage in daily activities (Ely, Brown and Fineberg, 2024[2]). Many also encounter frustration and inadequate care pathways within the healthcare system, complicated by a lack of effective diagnostic tools or biomarkers leading to difficulties in clinically recognising and diagnosing Long COVID. The lack of a standardised case definition for Long COVID also negatively impacts recognition and diagnosis for patients and physicians. Although there has been increasing consensus on the case definition, implementing this in clinical practice across health systems may prove challenging (see Box 1).
This lack of recognition of Long COVID and organised care models exacerbates the already significant challenges patients face in managing their complex and disabling conditions. Planning for the management and long-term impacts of Long COVID requires reliable estimates of the prevalence of the condition, its persistence over time, costs to patients, health systems, and economies. However, this is challenging due to the epidemiological uncertainties, such as the still-unknown duration, long-term effects of, and future incidence of the condition. While some patients seem to recover over months, others suffer relapses or endure persistent symptoms for months or even years (Cai et al., 2024[3]).
Given these uncertainties, early findings paint a concerning picture. If Long COVID symptoms persist long-term as a chronic condition, its societal impact will be immense. It also presents clear equity challenges, disproportionately affecting women, essential workers, and individuals in more socio‑economically deprived areas (Subramanian et al., 2022[4]). Shedding light on the clinical, epidemiological, and economic implications of Long COVID through robust data collection and economic analysis is essential to inform effective policy responses.
Up-to-date, population-level estimates of Long COVID prevalence are required for OECD countries to budget and plan the allocation of healthcare resources. However, most countries currently lack routine surveillance for estimating country-level prevalence of Long COVID. Currently, most OECD countries are reliant on clinical coding of hospitalised patients or COVID‑19 research studies to inform estimates, which may not be generalisable to the primary care or general population.
Primary care‑based surveys such as PaRIS (see Box 2) may provide more representative estimates of the impact of Long COVID on populations. The patient perspective of living with Long COVID is important to capture. Patient-reported health outcome (PROMs) and healthcare experience measures (PREMs) can be used to inform more effective and people‑centred heath policy and care pathways. An understanding of the health and social impact on patients in terms of their reported well-being and functioning, and their experience of navigating the healthcare system, can help inform the organisation of care pathways and optimise the detection, diagnosis and management of patients living with Long COVID.