The prevalence and impact of Long COVID in the primary care population

5. Patient reported experiences of Long COVID

5.1. Patients with Long COVID report worse experiences of healthcare and lower trust in the healthcare system

Good care co‑ordination is an essential component of high-quality care, and the lack of co‑ordination undermines trust in healthcare and healthcare professionals. Needing to repeat healthcare information that should be in a person’s care record during a visit, for example, indicates poor care integration, inadequate data infrastructure, poor data capture processes, and poor capacity to facilitate care transitions. This is associated with lower levels of trust in the healthcare system (OECD, 2025[7]).

Patients with Long COVID report challenges navigating healthcare, in their interactions with healthcare providers and accessing specialist services (Baz et al., 2023[21]). They are also referred to a higher number of different specialists owing to the multisystemic impact of Long COVID, requiring multiple consultations (Turk et al., 2023[22]). Compared to patients without Long COVID, significantly more patients with Long COVID reported having to repeat information that should be in their medical records (33% versus 25%). A lower proportion of patients with Long COVID reported having trust in the healthcare system (58% versus 64%) compared to those without Long COVID (see Figure 8).

Figure 8. Patients with Long COVID report worse experiences of the healthcare system

Source: OECD PaRIS 2024 Database.

5.2. Poorer experiences of and lower trust in the healthcare system likely reflect challenges in diagnosis of and co‑ordination of care for patients with Long COVID

The reported lower levels of trust in the healthcare system, and the more frequent need to repeat information may reflect dissatisfaction with the healthcare provided for Long COVID. As a novel and evolving disease entity, standard definitions and care pathways for Long COVID care are still being developed and rolled out by countries. The majority of patients with Long COVID will present to primary care in their first consultation. However, the diagnosis may only be available or confirmed in specialised outpatient clinics, resulting in diagnostic delays. The symptoms are also highly variable, involving different systems and thus the need to consult different medical specialties (e.g. musculoskeletal, respiratory and neurological) for management. A lack of co‑ordinated and integrated primary and secondary care for Long COVID likely explains the need to repeat information and lower trust in healthcare reported by patients. Better training and education on Long COVID for healthcare professionals in primary and specialist care could help improve recognition of symptoms of Long COVID, and deliver a timely diagnosis to patients.