Difficulties encountered by long COVID patients in the Belgian health system

Introduction: After contracting COVID-19, many people have continued to experience various symptoms for several weeks and months, even after a mild acute phase. These people with `long COVID' faced difficulties when confronted with the healthcare system. Purpose of research: In order to better understand their experience, we supplemented the information obtained in an online survey with a mixed qualitative approach based on 33 individual interviews and discussions with 101 participants in a forum in March 2021. Results: Several shortcomings were identified in the contacts of `long' COVID patients with the health care system, such as the lack of listening or empathy of some health care professionals, the lack of a systematic or proactive approach during the diagnostic assessment, or the lack of interdisciplinary coordination. Patients feel misunderstood and are forced to develop their own strategies, whether for diagnosis or treatment. Patients' discomfort has led them to question the value of medicine and to resort to unconventional therapies to alleviate their symptoms, sometimes at great cost. Conclusions: Better informing the medical profession about the manifestation of the disease and the possible treatments, including the possibilities of reimbursement, would raise awareness and give them the tools to respond to the needs of ` long' COVID patients. A comprehensive assessment of the patient through an "interdisciplinary assessment" seems necessary.

Long COVID and return to work: a qualitative study.

BACKGROUND: The COVID-19 pandemic has given rise to an increasing number of patients with 'long COVID'. Long COVID is the persistence of symptoms for weeks or months after an infection by SARS-CoV-2. It often impacts on the professional life of affected people. AIMS: The aim of this study is to understand the experiences and needs of people with long COVID in relation to their return to work. METHODS: A qualitative study, combining individual interviews and online forum discussions, was performed early 2021, as part of a larger mixed method study on the needs of long COVID patients in Belgium. RESULTS: One hundred and thirty-four people participated in the study. Participants described various clinical symptoms precluding their return to work. They also face sceptical reactions from employers and colleagues and a lack of support from the social welfare system to facilitate their return to work. These barriers have various impacts, including psychological ones, likely to compromise the professional future of long COVID patients. CONCLUSIONS: While the analysis of patients' experiences shows variation in long COVID patients' experiences with return to work, it may help occupational physicians and healthcare practitioners to better take up their crucial role in the return to work of long COVID patients, including raising employers' and colleagues' awareness of the specific difficulties related to long COVID.

Perspectives of long COVID patients on their (unmet) needs: a national quantitative and qualitative study : Marie Dauvrin

Introduction After COVID-19, many people continue to experience various symptoms for several weeks, even after a mild acute phase, and encounter difficulties when confronted with the healthcare system. Patient associations asked the Belgian Health Care Knowledge Centre to investigate the needs of these patients to improve their management. Purpose of research An online quantitative survey was conducted in 2021 among Belgian patients with history of COVID-19;having/had persisting symptoms for at least 4 weeks. Alongside questions on symptoms, treatment and impact on employment, Health-Related Quality of Life (HRQoL) before and after COVID-19 was measured through the EQ-5D-5L. A regression analysis identified the factors associated with the impact of long COVID on HRQoL. The qualitative approach consisted in 33 interviews and forum discussions among 101 patients. Results 1320 patients completed the online survey, most were symptomatic for more than 3 months. The average EQ-5D-5L index score was 0.85(95%CI:0.83-0.86) before and 0.65(95%CI:0.63-0.66) after infection. Duration, number and type of symptoms of long COVID significantly impacted HRQoL. More than half of the patients were unable to work. Qualitative part identified lack of empathy of health professionals, of systematic diagnostic approach, of interdisciplinary coordination. Patients felt misunderstood and developed their own diagnostic or treatment strategies. They questioned the value of medicine and resorted to non-reimbursed alternative therapies. Conclusions Long COVID has a significant impact on HRQoL and employment. Because of long COVID, patients were confronted, sometimes for the first time, with the imperfections of the health system. Better informing the health professionals on Long COVID patterns and management options, including reimbursement possibilities, and a comprehensive interdisciplinary assessment would give them the tools to respond to the needs of these patients.

Pathophysiology and mechanism of long COVID: a comprehensive review.

BACKGROUND: After almost 2 years of fighting against SARS-CoV-2 pandemic, the number of patients enduring persistent symptoms long after acute infection is a matter of concern. This set of symptoms was referred to as "long COVID", and it was defined more recently as "Post COVID-19 condition" by the World health Organization (WHO). Although studies have revealed that long COVID can manifest whatever the severity of inaugural illness, the underlying pathophysiology is still enigmatic. AIM: To conduct a comprehensive review to address the putative pathophysiology underlying the persisting symptoms of long COVID. METHOD: We searched 11 bibliographic databases (Cochrane Library, JBI EBP Database, Medline, Embase, PsycInfo, CINHAL, Ovid Nursing Database, Journals@Ovid, SciLit, EuropePMC, and CoronaCentral). We selected studies that put forward hypotheses on the pathophysiology, as well as those that encompassed long COVID patients in their research investigation. RESULTS: A total of 98 articles were included in the systematic review, 54 of which exclusively addressed hypotheses on pathophysiology, while 44 involved COVID patients. Studies that included patients displayed heterogeneity with respect to the severity of initial illness, timing of analysis, or presence of a control group. Although long COVID likely results from long-term organ damage due to acute-phase infection, specific mechanisms following the initial illness could contribute to the later symptoms possibly affecting many organs. As such, autonomic nervous system damage could account for many symptoms without clear evidence of organ damage. Immune dysregulation, auto-immunity, endothelial dysfunction, occult viral persistence, as well as coagulation activation are the main underlying pathophysiological mechanisms so far. CONCLUSION: Evidence on why persistent symptoms occur is still limited, and available studies are heterogeneous. Apart from long-term organ damage, many hints suggest that specific mechanisms following acute illness could be involved in long COVID symptoms. KEY MESSAGESLong-COVID is a multisystem disease that develops regardless of the initial disease severity. Its clinical spectrum comprises a wide range of symptoms.The mechanisms underlying its pathophysiology are still unclear. Although organ damage from the acute infection phase likely accounts for symptoms, specific long-lasting inflammatory mechanisms have been proposed, as well.Existing studies involving Long-COVID patients are highly heterogeneous, as they include patients with various COVID-19 severity levels and different time frame analysis, as well.

Long Covid: what is already known about this new condition?

Long COVID affects people who have experienced a severe form of COVID-19, as well as patients who suffered a mild form. Six months after infection with the coronavirus, at least 1 out of 7 patients still have symptoms. These symptoms are very diverse and are probably related to a combination of different mechanisms: direct organ damage due to the viral infection, abnormal immune and inflammatory responses that can lead to dysfunctions on several levels (microcirculation, coagulation, fibrosis, autoimmunity, metabolism), consequences of the hospitalisation (muscle atrophy, post-intensive care syndrome) or worsening of existing comorbidities. The Belgian Healthcare Knowledge Centre (KCE) surveyed the experience of Belgian patients by means of an extensive online survey of 1,320 people, followed by an online forum and in-depth interviews. It showed that the perception of the symptoms was very diverse, with a clear reduction in the quality of life, some loss of autonomy and difficulties when returning to work. The psychological consequences could be severe. Based on the current state of science, it is not known which treatments are effective for long COVID. A symptom-oriented approach, focused on gradual multidisciplinary rehabilitation, seems appropriate. Therefore, the main recommendation of the KCE is to investigate the possibility of introducing an 'interdisciplinary bilan' for patients with different and interrelated complaints.

Long COVID: Pathophysiology – epidemiology and patient needs

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? 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. 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.

The PanSurg-PREDICT Study: Endocrine Surgery During the COVID-19 Pandemic.

BACKGROUND: In the midst of the COVID-19 pandemic, patients have continued to present with endocrine (surgical) pathology in an environment depleted of resources. This study investigated how the pandemic affected endocrine surgery practice. METHODS: PanSurg-PREDICT is an international, multicentre, prospective, observational cohort study of emergency and elective surgical patients in secondary/tertiary care during the pandemic. PREDICT-Endocrine collected endocrine-specific data alongside demographics, COVID-19 and outcome data from 11-3-2020 to 13-9-2020. RESULTS: A total of 380 endocrine surgery patients (19 centres, 12 countries) were analysed (224 thyroidectomies, 116 parathyroidectomies, 40 adrenalectomies). Ninety-seven percent were elective, and 63% needed surgery within 4 weeks. Eight percent were initially deferred but had surgery during the pandemic; less than 1% percent was deferred for more than 6 months. Decision-making was affected by capacity, COVID-19 status or the pandemic in 17%, 5% and 7% of cases. Indication was cancer/worrying lesion in 61% of thyroidectomies and 73% of adrenalectomies and calcium 2.80 mmol/l or greater in 50% of parathyroidectomies. COVID-19 status was unknown at presentation in 92% and remained unknown before surgery in 30%. Two-thirds were asked to self-isolate before surgery. There was one COVID-19-related ICU admission and no mortalities. Consultant-delivered care occurred in a majority (anaesthetist 96%, primary surgeon 76%). Post-operative vocal cord check was reported in only 14% of neck endocrine operations. Both of these observations are likely to reflect modification of practice due to the pandemic. CONCLUSION: The COVID-19 pandemic has affected endocrine surgical decision-making, case mix and personnel delivering care. Significant variation was seen in COVID-19 risk mitigation measures. COVID-19-related complications were uncommon. This analysis demonstrates the safety of endocrine surgery during this pandemic.