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

Abstract 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.


Introduction:
An increasing number of individuals continue reporting symptoms following the acute stage of Covid-19 infection. Few studies have investigated the factors related to Long Covid. Our aim was to assess how multimorbidity, socioeconomic factors (immigration, education, employment, and income), and country of residence affect the presence and number of persistent symptoms attributable to Covid-19 illness in Europe.

Methods:
We used data from the SHARE Corona surveys collected in 2020 and 2021. The sample included 4,004 respondents aged 50 years and older who were affected by the Corona virus. The outcome was the number of persistent symptoms attributable to Covid-19 illness, including: fatigue; cough, congestion, shortness of breath; loss of taste or smell; headache; body aches, joint pain; chest or abdominal pain; diarrhoea, nausea; and confusion. We conducted a multilevel analysis for a hurdle model with negative binomial distribution.

Results:
Overall, 73% of respondents were estimated to have at least one persistent symptom associated with Covid-19 illness and, on average, they had 2.73 symptoms. However, there were some statistically significant across country differences in the presence and number of symptoms. Respondents who were employed were more likely to report at least one symptom (OR = 1.40) and those with higher levels of education were less likely to report any symptoms (OR = 0.67). Respondents with multimorbidity had an increased risk of experiencing an additional symptom (RR = 1.12) while respondents who were employed had a decreased risk of experiencing an additional symptom (RR = 0.85).

Discussion and conclusions:
Presence and number of persistent symptoms associated with Covid-19 illness was highly prevalent and varied significantly across European countries. Evidence from the present work underscores the need to target high-risk groups and those with multimorbidity to reduce long-term health consequences of Covid-19.

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.