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Across the WHO European Region, an estimated 17 million people were thought to be living with the long-term effects of COVID-19 in 2020/2021. Even now, while the worst of the pandemic may be over, the risk of developing long COVID symptoms from a COVID-19 infection – at 10–20% of those infected – remains just as strong.
Trying to find a solution to this conundrum, researchers from KU Leuven, a research university in Belgium, have been working to develop evidence-based guidelines to help health professionals treat patients. They have also been trialling a care pathway designed around the patient and their individual symptoms.
Developing care guidelines for long COVID
Launched in November 2022, the new nationally endorsed guidelines direct general practitioners (GPs), physiotherapists, occupational therapists, psychologists and dieticians on how best to care for patients living with symptoms 4 weeks after their COVID-19 diagnosis.
The guidelines were created in consultation with care-provider experts, patient representatives and patients themselves, and through reviews of published studies and following WHO guidance. They provide tips for in-depth diagnosis as well as practical steps for managing both physical symptoms and the mental impacts of the disease.
Dr Jan Verbakel of the Academic Centre for General Practice in the Department of Public Health and Primary Care at KU Leuven led the development of the care guidelines. He gave us a practical example of how they can help.
“Our research showed that practising physical exercise early on in treatments is a crucial part of the rehabilitation process, both to help rebuild stamina and to act as an antidepressant. Getting the balance right, so being able to prescribe a beneficial level of physical exercise without fear of condition relapse, is just one of the useful things that our guidelines can help health professionals with.”
Other tried and tested recommendations included in the guidelines help patients to help themselves in their own recovery, for example, by self-managing symptoms using breathing and energy conservation techniques.
The intention is to update the guidelines as knowledge develops on post COVID-19 condition and ways to treat it.
Developing a care pathway pilot
In July 2022, a dual-track care pathway pilot was launched in Belgium for patients experiencing symptoms 12 weeks or more after their COVID-19 diagnosis or after onset of their first COVID-19 symptoms. Patients can be referred to the pathway directly through their GPs or via specialists in the case of hospitalized patients, and can benefit from reimbursement of treatment costs through the country’s compulsory national health insurance scheme.
Following referral, patients are assigned to either a monodisciplinary pathway (where they see just 1 specialist) or a multidisciplinary pathway (where they see a range of specialists), depending on the complexity and severity of their symptoms.
Specialists involved in the pathways include physiotherapists, speech therapists, dieticians, occupational therapists, psychologists and neuropsychologists. The national health insurance reimbursement scheme enables them to provide a prescribed number of treatment sessions per year.
Through the multidisciplinary approach, a care coordinator is assigned (usually the GP or a delegated nurse within the patient’s health centre) who organizes a team meeting with all the necessary specialists and the patient. Together they agree on a number of health goals, which the care coordinator uses to design a tailored treatment plan outlining the order and number of sessions needed with each of the health specialists. These joint meetings are reconvened 2 to 3 times every 6 months to review the patient’s progress and decide on any changes to the treatment plan.
Dr Stefan Teughels is a GP and Medical Director of Domus Medica, the association of Flemish GPs in Belgium. He was involved in the design and rollout of the multidisciplinary pathway, and outlines the advantage of the pathway approach.
“Before the care pathway, there was no reimbursement of treatment costs, so patients had to pay for everything themselves. Having a team of primary-care staff involved in the treatment plans, in discussion with the patient themselves, means the patient is better informed and treatments can be tailored to their particular needs and adjusted as required.”
Ms Tinneke Claes is an occupational therapist working in the Antwerp area of Belgium who caught COVID-19 in March 2020 and went on to develop long COVID symptoms herself. She began to see her first patients referred through the pathway in September 2022 and describes some of the practical strategies she teaches to help them meet some of their health goals.
“Short-term memory loss, brain fog and fatigue are common among many of the patients I see. I talk them through techniques to reduce the impacts of these and to help prevent the stress and frustration that can result. Simple things, such as having set places for putting keys, for instance; repeatedly verbalizing the next task to be done; setting mobile phone alerts; creating a schedule for the day; and sticking to a manageable routine are all strategies that can make a real difference.”
The Belgian care pathway pilot runs until July 2023, at which time its approach and impact will be fully evaluated. Although it is still too early to draw firm conclusions, the difference it is making for some patients is encouraging.
Hilde, aged 47, caught COVID-19 in March 2022 and was still suffering from symptoms when she received hospital confirmation of post COVID-19 condition in June. “I would get out of breath and develop chest pains whenever I made the slightest effort with anything,” Hilde tells us. “Trying to exercise led me to feeling light-headed. All my muscles ached and I struggled to concentrate and remember things.”
The combination of these symptoms made it impossible for Hilde to work, do household chores, or even be in the company of others for more than 20 minutes at a time because her cognitive difficulties left her so exhausted. She was referred on to the multidisciplinary care pathway, where she was first seen by an occupational therapist in August, followed by a physiotherapist.
Nearly 6 months on, Hilde can see a marked improvement in how she feels. “I can do my household activities again, but ‘dosed’ – in other words, at a slower pace, limited in time, and alternating between rest and mental activities. My attention and concentration are still not as they were, but at least I can now be in the company of others for more than an hour because I have learned to detect signs of fatigue and to indicate boundaries, and I have strategies to deal with crowds.”
Hilde adds, “My rehabilitation process is still ongoing and will focus on further building up household and social activities and to returning to work in the near future.”
Hilde is thankful for the treatments she has received and believes the care pathway approach is best for other patients like her. “It feels very supportive to be surrounded by so much care and input from different disciplines. My GP referred me very quickly to suitable services and closely monitors the treatments I receive and my rehabilitation. I would definitely recommend this pathway to other long COVID patients.”
