Cystic Fibrosis

Supporting patients with cystic fibrosis during the COVID-19 pandemic

The current COVID-19 pandemic has been difficult for everyone but patients with existing respiratory conditions, such as cystic fibrosis, may be struggling more than most. The pandemic may have had a negative impact on both the physical and mental health of patients with cystic fibrosis. This article aims to provide some advice and tips to help you manage your patients with cystic fibrosis during the pandemic.

Monitor & Assess

As there is a potential increased risk caused by an impaired immune system, monitoring and assessing patients with cystic fibrosis is more important than ever.1

To ensure effective continued support from the Multidisciplinary Team (MDT), it’s essential that patients stay in communication with their healthcare professionals (HCPs), attending appointments when necessary and safe to do so. Particularly vulnerable patients amongst the cystic fibrosis population include:

  • those who have had an organ transplant2
  • those who have demonstrated low adherence to treatment3
  • those with a challenging home environment

Check that patients are continuing with physiotherapy and airway clearance from home, as well as ensuring that the patient is comfortable that they have the knowledge, equipment, and support to carry out their exercises.

From the start of the pandemic there has been a psychological impact on patients, with reports of increased stress, fear and worry about the future outside of the average norm.1 Patients may be dealing with mental health problems instigated or worsened by the anxiety and uncertainty of the pandemic, or limited contact due to lockdown restrictions. It may be beneficial for your patient to communicate with their cystic fibrosis psychologist. You could also suggest helpful patient organisations, such as the CF Trust in the UK.

Encourage & Reassure

Patients may need more encouragement and reassurance during these uncertain times. Many patients will have found themselves in unfamiliar situations at home and could be dealing with their condition without their usual support structures.

When surveyed, 85% of 913 patients with cystic fibrosis worldwide reported fear that treatments would become unavailable during the pandemic.4 It is important to reassure patients that their treatments should continue unless specified otherwise, and that they should attend clinical appointments where necessary. Reassure patients of the appropriate safety measurements that have been put in place and encourage patients to get help as soon as they notice any changes or developments in being unable to manage their condition. Access to medication should continue as normal however, inform patients to make their healthcare professional aware if any difficulties arise.

Physical activity is an important aspect of cystic fibrosis therapy, but it has been reported that patients with cystic fibrosis may have been undertaking less physical activity than before lockdown.5 Encourage patients to continue with some form of regular physical activity where possible. If you can, liaise with the cystic fibrosis physiotherapist to help manage an exercise routine and encourage patients to continue their normal routine as much as possible.

Encourage patients to speak regularly to friends and family, especially if they are isolated, to reduce or help prevent poor mental health. Two thirds of patients report that the pandemic has been detrimental to their wellbeing.4 Therefore, reassure your patients that there are services and techniques to help them if their mental health has been negatively impacted.

Chronic Lung Infections

It is vital that lung infections are continued to be treated and that patients have access to medication and advice when suffering with a new or chronic lung infection. Depending on feasibility, having the patient collect sputum samples at home and picking these up for them contact-free could be a safe way to monitor and diagnose chronic lung infections. In other cases, it’s important to remind the patient to follow their treatment cycle outlined by their HCP. This can include attending clinics, but the patient should contact their HCP if they notice a deterioration in their condition.


In most cases of COVID-19 in patients with cystic fibrosis, the disease is mild.6 However, mild or early stages of COVID-19 could be mistaken for symptoms of cystic fibrosis.7

A fever or worsening of cough are the main COVID-19 symptoms in patients with cystic fibrosis. Other symptoms can include the following:

  • muscle & joint pain
  • fatigue
  • increased dyspnoea
  • increased sputum production
  • headache
  • pharyngitis
  • pulmonary exacerbation
  • acute rhinitis
  • chest tightness
  • diarrhoea
  • abdominal pain
  • vomiting
  • nausea
  • wheezing.6

If in doubt, organise a COVID-19 test with the patient.

Video consultation

Video consultations are an effective way to carry out appointments without risking the spread of COVID-19.8 This should be a viable option for most patients with cystic fibrosis due to the average young age of the patient, but children should be accompanied in their appointments by a parent or guardian. You may also be required to consider the difficulties in virtual appointments for patients with disabilities. In some cases, a phone or face-to-face appointment may be necessary. For guidance on conducting effective remote consultations, see our checklist here.

Useful resources

Approval code:   RESP-TPE-NP-00035 Date of preparation:  March 2021


  1. Havermans T, et al. Journal of Cystic Fibrosis 2020; 19(6): 880-887.
  2. McClenaghan E, et al. Journal of Cystic Fibrosis 2020; 19(6): 868-871.
  3. Bishay LC and Sawicki GS. Adolesc Health, Med and Therap 2016; 7: 117-124.
  4. Rare Barometer Survey. CF-Europe, Available at [Accessed January 2021].
  5. Radtke T, et al. Journal of Cystic Fibrosis 2020; 19(6): 875-879.
  6. COVID-CF Project Europe. ECFS. Available at [Accessed January 2021].
  7. Colombo C, et al. The Lancet 2020; 8(5) doi: 10.1016/S2213-2600(20)30177-6.
  8. Car J, et al. BMJ 2020; doi: