Helping patients manage Long COVID at home
A test to help patients manage Long COVID at home has been developed. The adapted Autonomic Profile (aAP) test can be done by anyone with symptoms of autonomic dysfunction in conditions such as Long COVID, chronic fatigue syndrome, fibromyalgia, and diabetes 1 and 2, where people experience dizziness or blackouts.
The adapted Autonomic Profile (aAP) home-based test for the evaluation of neuro-cardiovascular autonomic dysfunction is published in the ANCR journal.
The team behind the test was led by Dr Manoj Sivan. Dr Sivan is Chief Investigator of the LOCOMOTION Study, Associate Clinical Professor and Honorary Consultant in Rehabilitation Medicine in the Leeds School of Medicine. He is the Research Lead for the Leeds Long COVID service and is Europe’s leading advisor on the treatment of the condition. Manoj led the development of the first Long COVID measure, called COVID-19 Yorkshire Rehabilitation Scale (C19-YRS), which has been advocated for use by NHS England and NICE.
Dr Joanna Corrado, Clinical Research Fellow, School of Medicine (Part of the research team) – “The test enables capturing symptoms, making adjustments, and avoiding fluctuations as much as possible. This can be very empowering for patients”
Autonomic testing is usually done on a single occasion in hospital. Patients lie on a tilt table, and their heart rate and blood pressure are measured as the table is manoeuvred from the horizontal position to vertical.
The new aAP test can be done at home. Meaning patients can better understand and self-manage their condition over time. As well as monitor the effectiveness of treatment prescribed by clinicians. It also reduces demand on NHS resources. By recording their blood pressure and heart rate at key times and in response to key activities, patients can work out if foods, exercise, or other activities trigger their symptoms. They can then make lifestyle changes accordingly.
The results can also be shared with clinicians to help them understand how patients’ bodies react to common triggers and stimuli in everyday life.
Dr Corrado – “Fluctuations in the condition, referred to as crashes, are one of biggest problems Long COVID patients face. The aAP test allows patients to capture these fluctuations more reliably, in addition to having a one-off test in the hospital. The test enables capturing symptoms in relation to physical activities, mental work, emotional stress and food intake. This allows them to make adjustments to their daily activities and avoid the fluctuations as much as possible. This can be very empowering for patients.”
Autonomic system
The autonomic system regulates involuntary physiologic processes including heart rate, blood pressure, breathing, and digestion. Dysfunctions develop when the nerves of this system are damaged, such as after a disease like COVID-19. Symptoms include dizziness and fainting on standing up, an inability to alter heart rate with exercise, or exercise intolerance, and digestive difficulties like loss of appetite, bloating, diarrhoea; palpitations, dizziness, brain fog and sleep problems.
Current tests to evaluate dysfunctions of the autonomic system are based on cardiovascular reflexes triggered by performing activities that stimulate the system. Blood pressure and heart rate can be affected by standing up or lying on a tilt table; breathing techniques; muscle contracting or relaxing; and mental arithmetic.
Development of the aAP began during the COVID-19 pandemic to enable patients to undergo testing and monitoring at home, rather than attend hospital.
It involves patients using a blood pressure monitor and heart rate monitor at home to observe physiological responses to key activities in daily life. Readings are taken on waking, after meals, after exertion and before sleep. The patients record changes in blood pressure and heart rate, and also record their symptoms, such as dizziness, on an aAP diary sheet.
Unlike other standardised tests, there is no need to abstain from caffeine, nicotine, alcohol or medications for the aAP. As the purpose is for patients to test in their daily life the reaction to common stimuli and record normal or abnormal autonomic responses.
Two million patients
Dr Sivan – “There are two million individuals with Long COVID in the UK. It is estimated more than a third of them might have altered functioning of the autonomic nervous system. This can present not only as feeling dizzy or racing of the heart but also as fatigue, exercise intolerance, brain fog, pain, and bowel or bladder symptoms. This test gives people with Long COVID easy access to diagnosis and monitor their own symptoms at home and gives them reliable evidence of the situations that trigger their symptoms.”
The aAP self-report paper version is free to use and can be downloaded as a PDF. An instruction sheet can also be downloaded as a PDF.
Blood pressure and heart rate monitors are available from the British Heart Foundation website.
------------------------------------------------------------------------
Video transcript:
A home test for helping people manage Long COVID at home has been developed at the University of Leeds. The test will allow the patient to monitor their heart rate and blood pressure after certain activities. So, they can better understand and self-manage their condition at home.
Dr Manoj Sivan – "Healthcare professionals have busy clinics, so patients can’t be monitored for 24 hours and these repeated tests. So, if patients can come up with the results and present them to the clinicians to say, 'these are my triggers', then it's easy for the clinicians to advise the patient."