Patients’ Experiences of “Long COVID” in the Community and Recommendations for Improving Services: A Quality Improvement Survey

Abstract

Introduction: “Long COVID” is a multisystem disease that lasts for 4 or more weeks following initial symptoms of COVID-19. In the UK, at least 10% of patient report symptoms at 12 weeks following a positive COVID-19 test. The aims of this quality improvement survey were to explore patients’ acute and post-acute “long” COVID-19 symptoms, their experiences of community services and their recommendations for improving these services. Methods: Seventy patients diagnosed with COVID were randomly selected from 2 large socially and ethnically diverse primary care practices. Of those contactable by telephone, 85% (41/48) agreed to participate in the quality improvement survey. They were interviewed by telephone using a semi-structured questionnaire about community services for COVID-19 patients. Interviews lasted 10 to 15 minutes. Results: Forty-nine percent of patients reported at least 1 post-acute COVID-19 symptom. The most common were severe fatigue (45%), breathlessness (30%), neurocognitive difficulties (such as poor memory), poor concentration and “brain fog” (30%), headaches (20%), and joint pain (20%). Many patients felt isolated and fearful, with scant information about community resources and little safety netting advice. Patients also expected more from primary care with over half (56%) recommending regular phone calls and follow up from healthcare staff as the most important approach in their recovery. Conclusions: In line with patients’ requests for more support, the practices now routinely refer patients with long COVID to an on-site social prescriber who explores how they are getting on, refers them to the GP or practice nurse when required, and sign posts them to support services in the community.

Back to life: Is it possible to be myself again? A qualitative study with persons initially hospitalised due to COVID-19

“…In contrast, a British study reported how COVID-19 participants felt distrusted by healthcare professionals ( 18 ). Moreover, recent qualitative studies showed that post-COVID patients felt a lack of support and were dismissed by health professionals when addressing their symptoms ( 14 , 17 , 22 ). In addition, the current participants emphasized that they wanted to feel secure and cared for, which is in line with previous research that highlighted the participants’ needs to be acknowledged and believed was crucial for their recovery ( 18 ).…”

“…Overall, participants felt content with going back slowly at a steady pace, although they did worry about whether they would be able to go back to work full-time. It seems that other qualitative studies present more anxiety concerning the return to work process (15,17,25). This applies both to concerns about working part-time and to worries concerning whether participants would receive extended sick-leave (15).…”

“…People may experience a range of symptoms for an unknown amount of time and with limited evidence on how to manage these symptoms ( 15 ). Individuals living with long COVID commonly report fears of long-term sequelae, fears of isolation, as well as anxiety about their work situation ( 16 , 17 ). Such uncertainty leaves people with persistent symptoms in a precarious situation with unclear prospects for their futures ( 18 ).…”

Neuropsychological Outcome of Critically Ill Patients with Severe Infection

“…Carfì et al described that two months after discharge from the ICU, about 44% of COVID-19 patients showed a worsened quality of life, with more than 50% of them showing fatigue [60]. In a quality improvement survey, Razai found that post-acute COVID-19 patients self-reported neurocognitive difficulties, such as a lack of memory and concentration, headache and "brain fog" [61].…”

Living with “long COVID”: A systematic review and meta-synthesis of qualitative evidence

“…Further, we retrieved and examined the full texts of those citations and excluded 21 that did not meet all criteria. Finally, 15 articles representing 12 studies were included in this qualitative systematic review and summarized in Table 2 (23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37).…”