“The dream is that there’s one place you go”: a qualitative study of women’s experiences seeking care from Long COVID clinics in the USA

Abstract

BackgroundSeeking and obtaining effective health care for Long COVID remains a challenge in the USA. Women have particularly been impacted, as they are both at higher risk of developing Long COVID and of facing gendered barriers to having symptoms acknowledged. Long COVID clinics, which provide multidisciplinary and coordinated care, have emerged as a potential solution. To date, however, there has been little examination of U.S. patient experiences with Long COVID clinics and how patients may or may not have come to access care at a Long COVID clinic.MethodsWe conducted semi-structured interviews with 30 U.S. women aged 18 or older who had experienced Long COVID symptoms for at least 3 months, who had not been hospitalized for acute COVID-19, and who had seen at least one medical provider about their symptoms. Participants were asked about experiences seeking medical care for Long COVID. Long COVID clinic-related responses were analyzed using qualitative framework analysis to identify key themes in experiences with Long COVID clinics.ResultsOf the 30 women, 43.3% (n = 13) had been seen at a Long COVID clinic or by a provider affiliated with a Long COVID clinic and 30.0% (n = 9) had explored or attempted to see a Long COVID clinic but had not been seen at time of interview. Participants expressed five key themes concerning their experiences with seeking care from Long COVID clinics: (1) Access to clinics remains an issue, (2) Clinics are not a one stop shop, (3) Not all clinic providers have sufficient Long COVID knowledge, (4) Clinics can offer validation and care, and (5) Treatment options are critical and urgent.ConclusionsWhile the potential for Long COVID clinics is significant, findings indicate that ongoing barriers to care and challenges related to quality and coordination of care hamper that potential and contribute to distress among women seeking Long COVID care. Since Long COVID clinics are uniquely positioned and framed as being the place to go to manage complex symptoms, it is critical to patient wellbeing that they be properly resourced to provide a level of care that complies with emerging best practices.