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Long Covid Advocacy - Breathlessness



Continuing in my series "Long Covid Advocacy" today I am discussing breathlessness and how you should go about getting this symptom investigated. The bulk of my post is referring to a Pulse Today article entitled "Long Covid: breathlessness". Pulse Today which is a leading publication of medical news and reviews for GP's in the UK. I have edited this where I have felt necessary!


Breathlessness (dyspnoea) and persistent breathlessness are common symptoms of long Covid. The primary driver of breathlessness in acute Covid-19 is a coronavirus lung infection that can cause an interstitial pneumonia, with a reduction in lung-diffusing capacity.

Acute interstitial pneumonia - Fever, cough, and difficulty breathing develop over 1 to 2 weeks tending to affect men and women over the age of 40 years. In severe cases this can progress to acute respiratory distress syndrome (ARDS).


Respiratory complications of Long Covid

Post-acute Covid-19, referred to as Long Covid, appears to be a multi-system disease that can occur even after a milder initial Covid-19 illness.

The symptoms of Long Covid include profound fatigue and persistent breathlessness, with emerging data indicating radiological and physiological features suggesting interstitial lung diseases as a respiratory complication. Of those hospitalised, up to 10% have demonstrated pulmonary fibrosis and organising pneumonia. Long-term fibrotic changes and reductions in lung function have also been described post-Covid-19 infection following pneumonias and ARDS.

The Office for National Statistics conducted a UK community population survey and identified that, following a Covid-19 infection, an estimated one in 10 had symptoms for 12 weeks or longer, with breathlessness estimated in 5% of ongoing cases.


Is the breathlessness due to Long Covid?

Ongoing breathlessness may have multiple causes, separate from Covid-19 infection. These include:

  • respiratory disease

  • cardiac involvement

  • neurological disorders

  • metabolic disorders.

It is essential to exclude these possibilities. NICE advice is to suspect Covid-19 as a cause of symptoms if a patient presents with new or ongoing symptoms four to 12 weeks after acute Covid-19 infection or if symptoms have not resolved in 12 weeks.


Breathlessness may also be linked to a disturbance in the function of breathing. Emerging evidence suggests this can occur in long Covid. For an individual to be efficiently and functionally breathing they must be able to adapt appropriately to stimuli with co-ordination and contraction of the diaphragm, abdominal muscles and muscles of the rib cage. This should not cause distress, and when it does it may be attributable to a breathing pattern disorder. Chronic changes in the function of breathing can result in dyspnoeic symptoms in the absence of, or in excess of what would be expected in, respiratory disease. ‘Breathing pattern disorder’ (historically known as hyperventilation) refers to a group of breathing disorders and may co-exist with respiratory conditions such as asthma. It is thought to be a result of an alteration in biochemical, biomechanical or psychophysiological factors. If other causes of breathlessness have been excluded, consider referral to respiratory physiotherapists.


Investigations and assessment

The priority is to establish the medical cause for the breathlessness. It could be a short-term complication of Covid, a longer-term complication such as interstitial lung disease or fibrosis, or a non-Covid disease.


Your GP should offer you a face to face appointment to observe:

  • for cyanosis

  • excessive accessory muscle use

  • ability to speak in sentences

  • altered respiratory rate

  • oxygen saturations

Personally I feel they could also offer a 1 minute sit to stand test to look for desaturations on exertion, and a lying and standing pulse and BP check to look for POTS (which can cause breathlessness too).


Outcome tools such as Medical Research Council (MRC) Dyspnoea Scale be helpful to determine the perception of breathlessness and impact on activity.




Investigations should be tailored to the clinical history, signs and symptoms and follow NICE guidelines.

I feel this should be, at least a:

  • Full blood count - to exclude anaemia by looking at the haemoglobin level and can show ongoing infection by looking at the white cell count

  • CRP/ESR/ferritin - markers of inflammation

  • D-dimer - can be raised in venous thrombotic emboli or “lung clots” but not conclusive

  • Troponin and BNP - to look for cardiac damage but again not conclusive

  • U&E’s (kidney and electrolytes) LFT’s (liver) TFT’s (thyroid)

  • Chest Xray - to look for pneumonia and exclude malignancy

  • ECG - trace of the heart

If symptoms are not explained on CXR a referral for pulmonary function testing and cardiac investigations should be made EVEN if the blood tests come back as normal.

These could include:

  • Lung function tests with DLCO

  • CTPA- chest CT scan looking for emboli in the vessels around the lungs

  • High definition CT - looking for lung tissue damage such as fibrosis

  • VQ scan - to look for micro emboli which are often missed on the CTPA

  • CPET - an exercise test to look for a breathing pattern disorder.


Management and follow-up

There is emerging evidence of the post-acute and recovery process for Covid-19. However, to date there is little evidence of the long-term implications and ongoing patient morbidity. Requirements for follow-up, investigations and implications after initial infection have yet to be identified.

A recent UK prospective observational study* found in its research that up to 74% of patients reviewed had persistent ongoing symptoms, most notably breathlessness and fatigue and of these 35% of post-Covid patients having clinically significant changes in radiology, blood tests or spirometry.

Long Covid clinics

Again there is some guidance on who should be referred to a Long Covid clinic. A referral should be considered following exclusion of other non-Covid causes if there is

  • breathlessness more than 12 weeks after infection

  • debilitating symptoms due to breathlessness, fatigue or psychological disturbance

  • symptoms which affect day-to-day activities, such as return to work.

Hospitalised patients should be followed up according to the British Thoracic Society guidelines and local policy. Patients with evidence of lung function abnormalities or persistent radiological features of lung fibrosis should be referred to specialist services.

Long Covid clinics may be able to refer to specialist respiratory physiotherapists who can help patients self-manage and retrain their breathing. Physiotherapy teams may also be able to help.


Resources for patients

Long Covid: breathlessness; Pulse Today https://www.pulsetoday.co.uk/clinical-feature/clinical-areas/respiratory/long-covid-breathlessness/

Your Covid Recovery. yourcovidrecovery.nhs.uk/

Your Covid Recovery – managing the effects of breathlessness. tinyurl.com/Covid-breathless

Chartered Society of Physiotherapy. Covid-19: The road to recovery. tinyurl.com/CSP-recovery

British Lung Foundation. Coronavirus and Covid-19. tinyurl.com/BLF-covid-recovery

Asthma UK and British Lung Foundation. Post-Covid hub. post-covid.org.uk/


Resources for doctors or more evidence for LC patients

1. NICE. Rapid guideline: managing Covid-19. NG191. April, 2021. nice.org.uk/ng191

2. Beyond the clot: perfusion imaging of the pulmonary vasculature after COVID-19

https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30407-0/fulltext

  • Venous thromboembolism and in-situ small vessel pulmonary thromboses are both implicated in COVID-19; these pulmonary vascular manifestations are a potential precursor to chronic thromboembolic disease and pulmonary hypertension

  • Small vessel thrombosis can be underestimated on conventional CT pulmonary angiogram (CTPA); perfusion imaging looks beyond the clot and assesses residual blood flow limitation

  • Ventilation perfusion (VQ) planar scintigraphy and VQ single-photon emission computed tomography (SPECT) are gold-standard screening tests in the assessment of chronic thromboembolism

3. British Thoracic Society. Guidance on Respiratory Follow Up of Patients with a Clinical-Radiological Diagnosis of Covid-19 Pneumonia. 2020 brit-thoracic.org.uk

* 4. Arnold D, Hamilton F, Milne A et al. Patient outcomes after hospitalisation with Covid-19 and implications for follow-up: results from a prospective UK cohort. Thorax 2020 3:thoraxjnl-2020-216086. doi: 10.1136/thoraxjnl-2020-216086. Epub ahead of print. PMID: 33273026; PMCID: PMC7716340



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