DOI: 10.1093/eurpub/ckag169.1520 ISSN: 1464-360X

Fragmented care pathways for Long COVID in France: Patient and clinician perspectives

H Dumesnil, P Oustric, C Reyes, J Vaschalde, N Agrinier, S Gentile, P Verger, J Gambaretti

Abstract

Background

While most individuals with SARS-CoV-2 recover, some develop persistent symptoms known as long COVID, with major impacts on daily life. This presentation reports findings from the qualitative component of a research project exploring long COVID care pathways and identifying opportunities for improvement in France.

Methods

Semi-structured interviews were conducted with 33 individuals with long COVID and 22 healthcare professionals (HCPs: GPs, other medical specialists, paramedics, rehabilitation practitioners, occupational physicians) with varying levels of long COVID expertise. Interviews followed semi-structured guides and were analysed using thematic analysis.

Results

Long COVID led to cumulative difficulties and major life disruptions, often inducing social vulnerability and exclusion. Care pathways were described as chaotic, fragmented and difficult to navigate. Participants highlighted frequent denial or minimisation of symptoms and medical wandering. Long waiting times were common and contributed to social isolation. Negative interactions with HCPs and experiences of mistreatment sometimes led to psychological distress and loss of trust in HCPs. Administrative procedures were perceived as complex and burdensome. HCPs described long COVID management as complex and time-consuming. Limited access to specialised care, insufficient resources and poorly structured pathways hindered care provision. Poor visibility of available services complicated referrals. Territorial inequalities were evident: in some areas, informal networks emerged, whereas in others, pathways were absent or funding had been discontinued.

Conclusions

Long COVID represents a substantial public health burden, with multiple barriers across care pathways. These findings underscore the need for more structured, coordinated and accessible care, alongside increased awareness among HCPs, the public and decision-makers.

Key messages

• Patients and HCPs converge: long COVID drives cumulative difficulties, social exclusion, and chaotic, fragmented care pathways that are hard to navigate.

• Long COVID must be recognized as a public health priority: structured, coordinated and equitable care pathways and awareness-raising among patients, HCPs, and policymakers are urgently needed.

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