“Long Covid is the shadow pandemic”. An “invisible and neglected condition, which affects about 10-20% of people who contract Covid”. ‘One-size-fits-all’ treatment plans, i.e. a single one-size-fits-all strategy for all patients, “do not work for such a complex disease”, which has over 200 reported symptoms. This is the warning launched via social media by the World Health Organization (WHO) for Europe, which – on the day chosen by patients from all over the world to promote International Long Covid Awareness Day – explains how a group of researchers from the Belgium is helping to pave the way for more tailored pathways to different patient needs. Experts have developed helpful guidelines for healthcare professionals and are piloting a pathway to help patients get the right care. Patients like Hilde, 47, who tells of her slow rebirth.
The Belgian team is trying to deal with a question: what is the best way to deal with a new and difficult pathology such as Long Covid? Many people are waiting for an answer. Across the WHO European Region, 17 million people were estimated to have lived 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 sequelae after infection remains just as strong,” warns the WHO Regional Office. Seeking to find a solution to the Long Covid conundrum, researchers at Ku (Katholieke Universiteit) Leuven, have been working to develop evidence-based guidelines to help healthcare professionals.
Launched in November 2022, they guide general practitioners, physiotherapists, occupational therapists, psychologists and dietitians on how to best care for patients living with symptoms. In the document, there are tips for thorough diagnosis and practical steps for managing both the physical symptoms and mental impacts of the disease. A concrete example? “Our research has shown that exercising 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, then being able to prescribe a beneficial level of exercise without fear of relapse is one of the useful things our guidelines can do,” notes Jan Verbakel of the Academic Center for General Practice, Ku Leuven. (continued)
Other tried-and-true recommendations included in the guidelines help patients help themselves in their recovery, for example, by self-managing symptoms, using breathing techniques, and energy conservation. The intention is to update the guidelines as knowledge develops about the post Covid-19 condition and ways to treat it.
In July 2022, a dual-track care pathway was launched in Belgium for patients who experience symptoms 12 weeks or more after being diagnosed with Covid. Patients can be referred to the program through their general practitioners or through specialists in the case of inpatients, and they can benefit from reimbursement of treatment costs through the country’s compulsory national health insurance system. After this step, patients are assigned to either a single-disciplinary pathway (where they see only one specialist) or a multidisciplinary pathway (where they see a range of specialists), depending on the complexity and severity of their symptoms. Through the multidisciplinary approach, a care coordinator is assigned (usually the general practitioner or a nurse delegate within the health centre) who organizes a team meeting with all the necessary specialists and the patient. Together they agree on a number of health goals. These joint meetings are reconvened two to three times every 6 months to review the patient’s progress.
“Short-term memory loss, brain fog, and fatigue are common among many of the patients I see,” testifies occupational therapist Tinneke Claes. She herself, after contracting Covid in March 2020, continued to experience symptoms of Long Covid. She began seeing her first patients referred through the pathway in September 2022, and today she describes some of the practical strategies she teaches to help them.
“I talk to them about techniques to reduce the impacts of these and to help prevent the stress and frustration that can arise from them – says the therapist – Simple things, like having precise places to put the keys, for example; repeatedly verbalizing the next task to do; set alerts on your cell phone; create a schedule for the day; and stick to a manageable routine,” Claes continues. Strategies, she assures her, “that can really make a difference”. The pilot project of the Belgian care pathway will last until July 2023, at which time it will be re-evaluated. While it is too early to draw definitive conclusions, the difference it is making for some patients is encouraging, explains WHO Europe.
In the testimony of the patient Hilde it emerges clearly. Hilde had Covid in March 2022 and she was still suffering from symptoms when she received hospital confirmation that she was in the grip of Long Covid. She was June. “I was out of breath – she remembers – and had chest pains whenever I made the slightest effort for anything. Trying to exercise made me feel dizzy. 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, as her cognitive difficulties left her exhausted.
She was therefore directed to the multidisciplinary care pathway and seen for the first time in August, followed by a physiotherapist. Nearly 6 months later, she reports a “marked improvement”. “I can carry out my household activities again, but ‘dosed’ and at a slower pace, and alternating rest and mental activities – he specifies – My attention and concentration are not yet what they were before, but at least now I can enjoy company of others for more than an hour because I have learned to detect signs of fatigue and indicate boundaries, and have strategies for coping with crowds.My rehabilitation process is still ongoing and will focus on further development of home activities and social issues and on returning to work in the near future”. It’s “so helpful to be surrounded by so much care and input from different disciplines,” she concludes.
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