Long COVID: Pathophysiology – epidemiology and patient needs

Castanares-Zapatero D, Kohn L, Dauvrin M, Detollenaere J, Maertens de Noordhout C, Primus-De Jong C, Cleemput I, Van den Heede K
Record ID 32018001702
Authors' objectives: The current KCE-study aims to provide information to policy makers to be used as one of the building blocks in the decision making process about which health care services and reimbursement rules are required for people with long COVID. In addition we aim to inform the general public as well as healthcare professionals about the scientific insights in long-COVID. More in particular we will focus on three main research parts: - Literature review on the epidemiology and pathophysiology of long COVID: How can long COVID be defined? How frequent is it? What are the most common symptoms? Which are the risk factors? What are the underlying pathophysiological mechanisms? - Patient survey and interviews: What are the needs and experiences of patients with long COVID complaints? - Analysis of current Belgian legislation and reimbursement rules: Which (reimbursed) services exist in Belgium to care for patients with long-COVID complaints?
Authors' results and conclusions: As described in the chapter on the epidemiology, patients living with long COVID constitute a heterogeneous group of population and suffer from a wide range of symptoms with different levels of severity and impact on everyday life. Moreover, there are still many unknowns about the underlying pathophysiological mechanisms, the diagnostic criteria, the duration of symptoms, patients’ needs, effectiveness of management and treatment approach, etc. Given all these uncertainties it is difficult to assess to what extent the Belgian healthcare system is able to absorb the needs of long COVID patients or to advise which and for whom changes are needed. However over the last years several research projects have been attempting at improving the management of the needs of complex (and chronic) patients ( see, i.e., the KCE report 190 on the health care organisation for chronic patients in Belgium, the KCE report 199 on the evaluation of the rehabilitation conventions, the KCE reports 57 (physiotherapy and physical and rehabilitation medicine), 87 (locomotor and neurological rehabilitation) and 140 (cardiac rehabilitation), the recommendations of the Observatory of Chronic Diseases and the reports of the High Superior Council). Besides, guidelines have been issued for some of the precited health problems, especially to support the GP, such as the management of depression or chronic pain.
Authors' recommendations: LONG COVID WILL BE AMONG US FOR QUITE SOME TIME We can conclude that despite the recent nature of the condition and the many unanswered questions, it is time to undertake action on several domains. We do not know yet how long the persistent symptoms will last among long COVID patients. Yet, it is clear that ‘long COVID’ will be among us for quite some time, also when the acute consequences of the COVID-19 pandemic are under control. This will concern patients who have been hospitalised and patients who had a milder form of acute COVID-19. Specific attention will be needed for those who were not tested during the first waves of the pandemic and still have persistent symptoms. EVIDENCE ABOUT ADEQUATE DIAGNOSIS AND TREATMENT PRACTICES ARE ABSENT To answer the question about ‘what services are needed’ and ‘how to organise care’ we first need evidence about the (cost-)effectiveness of interventions. Given that long COVID is a new condition that is still poorly understood, the evidence about how to manage care is currently very sparse. Therefore, public agencies around the world started initiatives that aim to generate this evidence. Also KCE launched a call for research on effectiveness of interventions. It will take some time before the evidence becomes available. In the meantime actions will be mainly expert opinion driven. Therefore, it is important that policy measures are temporary and canbe reversed or fine-tuned based on scientific evaluations. A CLEAR NEED FOR MORE AWARENESS We see a need to create awareness about long COVID both in the general public and in health professionals. It is clear that long COVID involves several subcategories of patients requiring differential diagnosis. In the absence of evidence on the effectiveness of long COVID management and treatment strategies, the medical community will have to develop consensus-based guidelines. INTEGRATED INTERDISCIPLINARY APPROACH The clinical manifestation of long COVID (e.g. wide variety of symptoms affecting several organ systems and also including an important mental health component) pleas for an integrated interdisciplinary approach for at least part of the patients. Although there are several possibilities within the currently reimbursed services, a missing link in our system for long COVID patients seems to be a one-stop interdisciplinary holistic assessment (involving e.g. medical specialists like pulmonologists, cardiologists, general internal medicine, physical medicine, psychologists, physiotherapists, social care, GPs) allowing fast diagnosis (e.g. exclusion of alternative diagnosis or deterioration of underlying comorbidities), functional assessment and fast referral to a patient tailored care pathway. This will probably be situated in the context of primary care for most (e.g. physiotherapy, consultations with psychologists, follow-up by GP) but might require more intensive follow-up (e.g. in a rehabilitation in a hospital setting) for others. INFORMATION NEED It will also be important to improve the information about the possibilities within the context of currently reimbursed services, as many healthcare professionals and patients seem to be uninformed. This creates variability in access to these services. MONITOR AND ADAPT Finally, given the many remaining uncertainties it will be important to monitor the scientific insights within this domain and allow that all of the measures that are taken are subject to change when new insights require adaptations.
Project Status: Completed
Year Published: 2021
Requestor: Patient association
English language abstract: An English language summary is available
Publication Type: Other
Country: Belgium
MeSH Terms
  • COVID-19
  • SARS-CoV-2
  • Coronavirus Infections
  • Symptom Assessment
  • Time Factors
  • Cognitive Dysfunction
  • Fatigue
  • Post-acute COVID-19 syndrome
  • COVID-19* / complications
  • COVID-19 / epidemiology
  • COVID-19 / pathology
  • COVID-19 / physiology
  • Interview
  • Surveys and Questionnaires
  • Belgium
Organisation Name: Belgian Health Care Knowledge Centre
Contact Address: Administrative Centre Botanique, Doorbuilding (10th floor), Boulevard du Jardin Botanique 55, B-1000 Brussels, Belgium tel: +32 2 287 33 88 fax: +32 2 287 33 85
Contact Name: info@kce.fgov.be
Contact Email: info@kce.fgov.be
Copyright: Belgian Health Care Knowledge Centre (KCE)
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.