Long COVID: Opportunities for nurses and midwives to research, innovate and collaborate

Nurses and midwives as frontline healthcare workers are among the most vulnerable groups worldwide since the beginning of COVID-19 pandemic. Direct contact with potentially affected patients was an issue, but challenging work environment they faced with staff shortages, long working hours, unavailability of personal protective equipment, and the emotional stress of witnessing the sickness made their ordeal even more difficult¹. Most countries are adapting to post-COVID norms with increased uptake of vaccines and early at-home management of symptoms. This progress has come with its challenges for nursing and midwifery, a major one being the pandemic’s lasting shadow, commonly called long COVID.

Globally, more than 400 million people have been affected by coronavirus. While most of them recover well, many individuals continue to experience virus-related symptoms long after the acute infection phase is over. These lingering effects of SARS-CoV-2 are referred to as long COVID or post COVID-19 syndrome²,³. Evolution of the understanding of long COVID is quite interesting. It first gained traction in mid-2020 among support groups on social media via patients’ anecdotal accounts of their sufferings. Initially, it was disregarded by the medical community on accounts of possible anxiety or stress⁴; however, that soon changed, with the patient-coined term ‘long COVID’ being accepted by the scientific community and research on the condition began⁵. The United Kingdom’s National Institute of Health and Care Excellence (NICE) recently updated its guidelines to include clinical case definitions to identify and diagnose the long-term effects of COVID-19. They propose three categories⁶:

1. Acute COVID-19: Sign and symptoms of the virus for up to four weeks.
2. Ongoing symptomatic COVID-19: Sign and symptoms of the virus from four weeks up to 12 weeks.
3. Post COVID-19 syndrome: Signs and symptoms that develop during or after a COVID-19 infection, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and affect any body system. Post‑COVID‑19 syndrome may be considered before 12 weeks, while the possibility of an alternative underlying disease is also being assessed.

Commonly reported symptoms of long COVID include fatigue, cough, breathlessness, body aches, chest pain, and change in the sense of taste or smell³,⁷–⁸. More symptoms are being reviewed at the time of writing this editorial. Even though the exact pathophysiology is unknown, scientists have hypothesised that at least some of the mechanisms include some form of immune dysregulation, autoimmunity, and viral persistence⁹. Management of long COVID symptoms is mainly symptomatic and depends on an individual’s medical history and comorbidities.

Long COVID has brought unique challenges and subsequent opportunities for the global nursing/midwifery community, mainly associated with the newness of the condition. While our understanding of long COVID has increased over the last two years, much remains unknown. For instance, how do we distinguish between post-COVID syndrome and other illnesses with similar presentation, especially when post-COVID syndrome has been reported in those that were never clinically diagnosed with the virus? Are there any preventative health measures that could be taken to avoid long COVID-19? What should patient education look like? These are some of the questions that public health and nursing research can answer. We need targeted studies that explore patient behaviours and the effects of nursing interventions in primary and rehabilitation settings. Well designed and implemented studies at institutional, federal, and national levels can help improve an understanding of the condition, assist in developing better care plans, and bridging existing knowledge gaps. There are also opportunities for nurses available globally to establish interdisciplinary collaborations to conduct large scale studies. For example, in the United States, nurses can benefit from their National Institutes of Health’s Recover program.¹⁰In Australia, National Health and Medical Research Council’s Medical Research future funds¹¹ can be huge enablers.

In addition to knowledge gaps, limited advancements in the health informatics space to manage long COVID is also challenging. In the last two years, we witnessed the rapid increase in mobile applications related to the acute COVID-19 virus. These applications were mainly implemented for training, contact tracing, education, self-management, home monitoring and information sharing¹². Online web-based symptom checkers and health information websites also incorporated virus-related content. Additionally, telehealth became the primary source of patient-provide contact in most non-acute settings. Several prediction models were also developed for diagnosis and prognosis purposes¹³. With an increasing focus on post-COVID syndrome, there are no preliminary reports so far of similar prediction models being developed to identify the population at risk¹⁴. Another relating challenge is ensuring such prediction models are validated with the real-world data and implemented in clinical space to benefit patients and clinicians. Nurses and midwives are extremely well positioned to participate in all stages of health information technology lifecycle, from design and planning to implementation and evaluation¹⁵. Going forward, nursing/midwifery informaticians have an opportunity to redesign current decision support systems to include validated tools and build on existing telehealth and mhealth innovations to create sustainable digital resources that can help them identify and manage long COVID symptoms efficiently.

Another significant challenge of post COVID syndrome is the long term impact on our health system. There is enough evidence to explain multi-organ manifestations of long COVID¹⁶ that any one clinical specialty cannot manage alone. In some cases, the lingering symptoms are seriously debilitating, making it hard to perform certain activities such as concentrating on tasks, making decisions, or being physically active for extended time. Given the diversity of symptoms and complexities associated with chronic illnesses, we are faced with a health condition that will need a multidisciplinary approach to management. In some countries, including Australia, special clinics are being set up for long COVID patients¹⁷–¹⁸. These clinics are staffed with health experts and professionals to provide holistic care to patients presenting with ongoing symptoms. It offers a unique opportunity for nurses to become active members of multidisciplinary teams and use their professional nursing knowledge and clinical skills to benefit all parties involved.

Over the last year, we have seen a rise in the number of children affected by COVID and a subsequent increase in paediatric COVID long haulers. A study from the United Kingdom found that school-age children experienced persistent symptoms on average eight months after the acute infection¹⁹. While we acknowledge the importance of schools and childcare centres in physical and cognitive development of children, we cannot deny that long COVID has brough new opportunities nurses based at schools and other paediatric settings²⁰. Long COVID symptoms can directly affect a child’s everyday function, school performance, and participation in co-curricular activities. With their unique skillset, school nurses are already carrying out comprehensive assessments with students affected by the virus. They can further collaborate with clinicians, teachers, parents, and guardians to develop a plan to safeguard children’s right to education and fair assessments based on their individual functional needs.

As the number of COVID cases climbs up around the world, so does that of individuals who will experience persistent symptoms, possibly affecting millions of individuals worldwide. We will continue to see patients with post COVID syndrome for a very long time. This year on international nurses and midwifery days, as we celebrate the incredible work we have done to help our patients, community, and health systems during the acute pandemic years, we need to reflect on how we can overcome these new challenges and plan for a safe future for all. This means a future where we can predict and prevent complications stemming from COVID and are better prepared if faced with more turbulences.

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Saba Akbar, May 2022