Patient experience with healthcare: Feedback for a ‘Post COVID-19 clinic’ at a tertiary care center in rural area

Abstract

PurposePost-acute sequelae of SARS-CoV-2 (PASC) is a complex condition with multisystem involvement. We assessed patients’ perspectives and experience with a PASC clinic established at University of Iowa in June 2020.MethodsWe conducted a mixed-method survey in June 2021 to ask PASC clinic patients about 1) PASC symptoms and their impact on physical and mental health, and cognition using the PROMIS Global Health and Cognitive Function abilities items, and 2) satisfaction with clinic services and referrals, barriers to care, and recommended support resources.FindingsNinety-seven patients (97/277, 35% response rate) completed the survey. Most were women (67%, n=65/97), Caucasian (93%, n=90/97) and received outpatient care during acute COVID-19 illness (79%). Fifty percent reported wait time of 1-3 months and 40% traveled >1 hour for appointment. The most common symptoms >3 months from initial infection were fatigue (77%), “brain fog” (73%), exercise intolerance (73%), anxiety (63%), sleep difficulties (56%) and depression (44%). Qualitative analysis of open-ended answers added valuable context to quantitative results. A minority of patients reported significantly reduced functioning (≥1.5 SD below mean) of their physical health (22.5%), mental health (15.9%) and cognitive abilities (17.6%). Satisfaction with clinical services was high though participants identified barriers to care including scheduling delays and financial concerns. Respondents suggested potential strategies for optimizing recovery including continuity of care, a co-located multispecialty clinic and being provided with timely information from emerging research.ConclusionOur study reports high PASC symptom burden, its impact on health and patient experience with healthcare. It is important that primary healthcare professionals listen to patients with empathy and support them during recovery. Healthcare systems and policymakers should focus on accessible, comprehensive, and patient-centered integrated care.

Brain Fog and Fatigue following COVID-19 Infection: An Exploratory Study of Patient Experiences of Long COVID

“…The Centers for Disease Control and Prevention (CDC) defines post-COVID-19 conditions as “new, returning, or ongoing health problems people can experience after first being infected with the virus that causes COVID-19” [ 4 ]. Studies on long COVID have reported multisystem involvement with a range of physical and neuropsychiatric symptoms after infection [ 5 , 6 , 7 , 8 , 9 , 10 ]. Shortness of breath, cough, chest pain, dizziness, fatigue, anosmia, dysgeusia, headache, and cognitive difficulties are among the most common symptoms reported in the studies [ 5 , 6 , 8 ].…”

“…Early qualitative research on the broader patient experience of COVID-19 has revealed some common themes including symptom variability, a heavy sense of stigma, siloed care, the burden on patients to access care, and fear of a permanent reduction in physical and cognitive abilities [ 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ]. Open-ended survey studies have also highlighted themes such as multiple symptoms with variable intensity, challenges seeking medical care, motivation to move forward with self-compassion, and also interest in participating in research to explore more about the condition [ 10 , 28 , 29 ]. A recent meta-analysis of 81 studies reported 32% of patients experienced fatigue and 22% reported cognitive impairment 12 or more weeks after COVID-19 diagnosis [ 30 ].…”