Developing services for long COVID: lessons from a study of wounded healers

Abstract

Persistent symptoms lasting longer than 3 weeks are thought to affect 10-20% of patients following SARS-CoV-2 infection. No formal guidelines exist in the UK for treating patients with long COVID and services are sporadic and variable, although additional funding is promised for their development.In this study, narrative interviews and focus groups are used to explore the lived experience of 43 healthcare professionals with long COVID. These individuals see the healthcare system from both professional and patient perspectives, thus represent an important wealth of expertise to inform service design.We present a set of co-designed quality standards, highlighting equity and ease of access, minimal patient care burden, clinical responsibility, a multidisciplinary and evidence-based approach, and patient involvement; and we apply these to propose a potential care pathway model that could be adapted and translated to improve care of patients long COVID.

Keywords: long COVID,; new service model; post-acute COVID-19; qualitative study; quality standards.

Fig 1.

Potential long COVID care pathway co-designed by study participants. ^a = for example, the COVID-19 Yorkshire Screening Tool or post-COVID-19 syndrome functional assessment scale; ^b = possible specialist investigations (not a definitive list); ABPM = ambulatory blood pressure monitoring; BNP = brain-natriuretic peptide; BP = blood pressure; CK = creatinine kinase; CRP = C-reactive protein; CT = computed tomography; CTA = computed tomography angiography; CTH = computed tomography of the head; CTPA = computed tomography pulmonary angiography; CXR = chest X-ray; ECG = electrocardiography; ENT = ear, nose and throat; FBC = full blood count; Fe studies = iron studies; F2F = face-to-face; GP = general practitioner; LFTs = liver function tests; MRI = magnetic resonance imaging; SALT = speech and language therapy; TFTs = thyroid function tests; TTE = transthoracic echocardiography; U&Es = urea and electrolytes; US = ultrasound.