Long COVID 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. Patients with Long COVID experience a wide range of persistent symptoms that impact their physical and mental health, ability to work and engage in daily activities. Many also encounter frustration and inadequate care co‑ordination within the healthcare system, leading to difficulties in recognising and diagnosing Long COVID.
Health system planning for Long COVID management requires reliable estimates of prevalence, health impact, and costs to patients, health systems and economies. This is difficult due to epidemiological uncertainties on Long COVID, including unknown duration, long-term effects and future incidence. Robust data collection and economic analysis are essential to inform effective policies, yet most countries lack routine surveillance for estimating country-level prevalence of Long COVID. OECD countries typically rely on coding of hospitalised patients or research studies, not representative of the primary care or general population. Primary care‑based surveys 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 in order to inform more effective and people‑centred heath policy and care pathways.
To estimate the disease burden of Long COVID in OECD populations, we used the PaRIS dataset to provide estimates of prevalence, as well as its health and social impact. The OECD Patient-Reported Indicator Surveys (PaRIS) is a cross-sectional survey of 107 011 primary care patients aged 45 years and older across 16 OECD countries, who had a primary care contact within the previous six months. Surveyed primary care patient reported sociodemographic status, chronic conditions, health outcomes, healthcare experiences and Long COVID symptoms.
According to the PaRIS survey data collected in 2023, 7.2% of the primary care population aged 45 years and older across 16 OECD countries are estimated to have ever had Long COVID, ranging from 3.9% in Greece to 10.8% in Norway. An estimated 5.1% of the primary care population aged 45 years and older were estimated to be living with Long COVID in 2023. Among primary care patients, the reported Long COVID prevalence was significantly higher among females, those aged 45‑54 years, and with a higher educational level. Long COVID prevalence increased with the number of other chronic conditions, but 6% of patients without any other chronic condition still reported ever having Long COVID.
People living with Long COVID reported poorer physical and mental health. Three in four people with Long COVID self-rated their mental health as good, compared to over four in five people without Long COVID. Only six in ten people with Long COVID self-rated their physical health as good, compared to seven in ten people without Long COVID. One in five patients with Long COVID reported severe fatigue, compared to one in ten patients without Long COVID. Patients living with Long COVID reported higher rates of severe fatigue than those without, even when their number of chronic conditions was accounted for. One in eight patients with Long COVID were unemployed or on sick leave. Patients with Long COVID reported higher prevalence of musculoskeletal, respiratory, neurological and mental health disorders, which represent the main recognised clinical subtypes of Long COVID.
Patient-reported healthcare experiences were worse in patients who reported having Long COVID. One in three patients with Long COVID reported having to repeat information that should already be in their medical records, compared to one in four patients without Long COVID. In addition, a lower proportion of people with Long COVID reported trust in the healthcare system (58%), compared to people without Long COVID (64%). Having to repeat information is likely linked to lack of co‑ordinated healthcare for Long COVID, leading to lower trust.
Co‑ordinated and standardised care pathways can help to detect, diagnose and manage patients living with Long COVID. The PaRIS survey revealed considerable country variation in reported Long COVID prevalence across OECD countries surveyed, as well as the different symptom presentations of Long COVID. Health policy makers may consider i) developing training for healthcare professionals to improve recognition of symptoms and prompt diagnosis of Long COVID for patients; ii) prioritising establishment of integrated and standardised care pathways for diagnosis and management of Long COVID, to improve the co‑ordination and experience of healthcare for patients.