Researchers in the UK have suggested new quality principles that they say should inform and underpin both generalist and specialist services available to patients living with “long COVID.”
“Long COVID,” which affects around 10% of patients, refers to coronavirus disease 2019 (COVID-19) that is still causing symptoms beyond 3 to 4 weeks.
The team drafted the new quality criteria based on findings from a study of 114 individuals living with long COVID in the UK.
“To our knowledge, this is the largest and most in-depth qualitative study of long COVID published in the academic literature to date,” writes the team.
Trisha Greenhalgh (University of Oxford) and colleagues from Imperial College School of Medicine and the Central and North West London NHS Foundation Trust said:
“This study has illustrated the uniquely varied, burdensome, and uncertain nature of the lived experience of long COVID and provided some preliminary principles for developing services to address their needs.”
A pre-print version of the paper is available on the server medRxiv*, while the article undergoes peer review.
More definitive guidance is needed
People with long Covid experience a range of persistent and fluctuating symptoms, including cough, fever, sore throat, shortness of breath, chest pain, cognitive problems, muscle pain, neurological symptom, diarrhea, and skin rashes.
“Despite preliminary guidance from multiple sources, there is not yet a consistent approach to the diagnosis, management, and follow-up of patients with long Covid,” say Greenhalgh and colleagues.
In the UK, the National Institute for Health and Clinical Excellence, Royal College of General Practitioners, and Scottish Intercollegiate Guidelines Network are working together to develop a more definitive guidance. NHS England has also allocated funding for a new long Covid service.
However, for these initiatives to be effective, they need to be informed not only by objective studies of tests and treatments but also by studies exploring the subjective experiences patients have had, say the researchers
What did the researchers do?
The researchers set out to document patients’ experiences of living with long COVID, accessing services, and receiving care. They also invited suggestions from patients about how the management of their illness and the design and delivery of services could be improved.
The study group included 114 participants, 55 of whom attended individual interviews and 59 who took part across eight focus groups.
Participants (aged 23 to 73 years) were recruited from UK-based long COVID patient support groups, social media, and snowballing and included high representation from health professionals (27 doctors and 23 other healthcare professionals).
The analysis revealed several important findings
Participants reported experiencing long COVID as a confusing illness with many varied and often relapsing-remitting symptoms and an uncertain prognosis. They also reported feelings of loss and a strong sense of stigma.
Other negative experiences included difficulty accessing and navigating services (both general and specialist), which some said they found fragmented and siloed, and difficulty being taken seriously and receiving a diagnosis.
The study also revealed variation in standards of clinical practice, with inconsistent criteria for seeing and referring patients, and variation in the quality of the therapeutic relationship, with some participants saying they felt “fobbed off” and others saying they felt well supported.
Suggested quality criteria for long COVID services
The team from the University of Oxford, Central and North West London NHS Foundation Trust, Imperial College London and the University of Manchester used these findings to inform the following six draft quality criteria for long Covid services.
Everyone with long Covid should have access to appropriate care, whether or not they have had a positive laboratory test for Covid-19 or a hospital admission.
2. Burden of illness
The burden on the patient for accessing, navigating and coordinating their own care should be minimized. Care pathways should be clear and referral criteria explicit.
3. Clinical responsibility and continuity of care
Clinical responsibility for the patient should be clear. While specialist investigation and management of particular complications is important; one clinician should take care of the whole patient and provide continuity of care.
4. Multi-Disciplinary rehabilitation services
Patients requiring a formal rehabilitation package should be assessed by a multi-disciplinary team including (e.g.) rehabilitation, respiratory and cardiac consultant, physiotherapist, occupational therapist, psychologist, and (if needed) neurologist.
5. Evidence-based standards
Standards and protocols should be developed, published and used so that investigation and management is consistent wherever care is received.
6. Further development of the knowledge base and clinical services
Clinical teams should proactively collect and analyze data on this new disease so as to improve services and build the knowledge base. Patients should be partners in this endeavor. As a first step, patients need to be counted, and prevalence rates and prognosis established.
The researchers say that based on the study data, they believe that these quality principles should inform and underpin both generalist and specialist services for long Covid.
“Based on our findings, general practitioners and other primary care clinicians appear to need better knowledge, better guidance, and more time and resources to deliver the generalist care and support which many patients with long Covid need, though this would have resource implications,” concludes the team.
medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.