Information for cystic fibrosis, PCD and non-CF bronchiectasis families

General

There are many organisations both nationally and internationally who are providing CF specific information about COVID-19. We recommend Australian resources as these are most relevant to our local situation. We strongly encourage you to visit the State or Federal services website for up-to-date information:

• www.dhhs.vic.gov.au/coronavirus
• www.cysticfibrosis.org.au
• www.cfwa.org.au/news/coronavirus-and-cystic-fibrosis
• cfcc.org.au/covid-19-coronavirus-resources

Physical exercise programs whilst in quarantine can be a tricky task. Our respiratory physiotherapy team have prepared a handout that lists a range of exercise resources split into age appropriate categories including online videos and virtual exercise platforms. This is beneficial for all patients (and parents) not just patients with CF/bronchiectasis/PCD. Download the resource  handout.

Chest exacerbations

Chest exacerbations are often caused by viral infections and this might include the virus that causes COVID-19.

• We want you to manage these exacerbations as you normally would
• We encouraged families to follow the DHHS recommendations for COVID-19 testing where necessary
• Currently, if your child has symptoms of COVID-19, they should get tested
• For where and when to have COVID-19 testing: (See 'FAQ > what should i do if i am worried my child might have COVID-19?')

For children with cystic fibrosis:

To download a higher resolution PDF, click  here.

For children with PCD and non-CF bronchiectasis:

If you or your child notices a change in their baseline cough:

• Increase airway clearance to twice a day
• Start a course of antibiotics (for children already on regular antibiotics, continue the same type)
• For CF families, ensure regular use of Pulmozyme/ Hypersal if these have been recommended

Reassess your child’s cough after two weeks:

• If cough has cleared, stop antibiotics
• If cough is improving but still present, continue for a further 2 weeks and reassess
• If cough is the same or worse, email your concern to respiratory.medicine@rch.org.au

If at any point your child becomes more unwell:

• For enquiries that can be answered within 1-2 business days, email: respiratory.medicine@rch.org.au
• For enquiries that require a response within the same day:
  • During working hours call: 93455818
  • After hours: call the hospital switch board on 93455522 and ask for the respiratory doctor on call

For situations requiring urgent medical review:

• Call an ambulance (000) or present to the emergency department

Cough swabs & sputum samples

Our department is organising home cough swabs and sputum samples to those who require it. In this circumstance the department will send instructions and equipment to families prior to clinic.

• For CF families, this will be available to all patients who can comply with performing a cough swab or sputum collection, prior to clinic.
• For bronchiectasis/PCD families, children will be screened prior to clinic to see if they need one. These families will be contacted prior to clinic.
• Helpful instructions on how to collect samples:
  • A PDF instructional guide on collecting a cough swab sample can be found here. For a video demonstration, click here.
  • A PDF instructional guide on collecting a sputum sample can be found here. For a video demonstration, click here.
    
    

Lung function

Lung function testing is only available for urgent/clinically indicated cases. This is due to the risk of lung function tests aerosolising virus particles, risking infection of other patients and staff. 

Scripts

Please see our page on clinical processes on how to organise scripts through the department.

Information for tracheostomy families

Most children who contract COVID-19 will suffer only mild symptoms. If your child develops new respiratory symptoms such as fever, cough, runny nose, increased secretions or sore throat, continue with your child’s usual respiratory management and contact your RCH team (Complex care hub or respiratory teams – see ‘Getting in touch' for further advice if you have concerns.

Reducing risk of infection spread

If your child has a respiratory tract infection, tracheostomies can increase the risk of spreading the viruses through dispersing moisture droplets carrying the virus in the air (aerosols). Parents can take measures to reduce the risk of infection to others in the household, including getting vaccinated if eligible, good hand hygiene, the main carer wearing a surgical mask  (see the FAQ for more advice around reducing infection spread).

Coordination of face-to-face reviews

Should a face-to-face review be required, this will be coordinated through the emergency department rather than the outpatient department given the risk of virus aerosolization through a tracheostomy.

Information for home ventilation families

Compared to adults, most children infected with coronavirus (COVID-19) have a milder illness.

• There is no evidence to suggest that your child is more at risk of getting COVID-19 from using their regular home ventilation.
• If your child has a respiratory tract infection, using home ventilation (including CPAP and BIPAP) could increase the risk of spreading the virus including coronavirus to those around your child (because it 'aerosolises' the virus or spreads it in moisture droplets in the air)

Using CPAP or BiPAP during respiratory tract infections

Continuing to use CPAP or BIPAP during respiratory tract infection depends on your child’s device and how dependent they are on it. You may need to discuss your child’s specific needs with your treating physician, however:

• For patients on CPAP with a respiratory tract infection: For some children on CPAP, it will be safe for them to temporarily stop using their CPAP until their symptoms have resolved (up to 14 days) or they have been tested and cleared of having coronavirus. This is to reduce risk of infection to others in the household.
• For patients on BIPAP: For children dependent on home ventilation (most BIPAP patients) they will be unable to stop their therapy however, parents can take measures to reduce the risk of infection to others in the household e.g. good hand hygiene, the main carer wearing a surgical   mask. Your medical specialist may advise you to have your child tested for coronavirus and other infection control measures appropriate to the family circumstances. *Do not stop using your prescribed BIPAP therapy until advised to by your specialist.

Cleaning instructions for equipment if your child has coronavirus 

Manufacturer guidelines should be followed regarding cleaning/disinfection of mask and tubing.

Coordination of reviews

Clinic reviews will be coordinated predominantly through telehealth appointments. Face-to-face appointments will only be organised at the discretion of your clinician. If a face-to-face review be required, this will be coordinated through the outpatient department. For patients who are on day time ventilation, face-to-face reviews may be coordinated through the emergency department rather than the outpatient department given the risk of virus aerosolization from the ventilation.

Sleep studies

Sleep studies

• Our Sleep Study service has restarted at a limited capacity. 
  
  • Your child may be required to have a COVID swab or RAT test prior to their study (depending on circumstance). You will be contacted in advance to organise this. Results will need to be made available for staff to check at the time of the sleep study.
  • Sleep staff performing the essential sleep studies will wear personal protective equipment (PPE)
• Postponed studies are currently being rescheduled based on urgency. We ask for your patience as we still only have a limited capacity for performing studies.

HITH oximetry service 

Home overnight oximetry testing is available.

There may be delays and these studies will be prioritised based on urgency.

Information for research studies

Most research activities will be put on hold. This may change overtime and the relevant families will be contacted when this occurs.

AREST CF

For AREST CF study participants aged 0–2 years can you:

• Please continue to collect stool samples approximately every three-four months
• Please label the container with your child’s name and the date that the sample was collected
• Please store in your freezer in a ziplock bag until further notice

AREST CF Part 3: The Next Generation of Impact in Cystic Fibrosis

• Recruitment will continue
• In person study visits will not start until further notice
• Some online based activities will continue
• For those already recruited, your scheduled investigations will be cancelled and will be rescheduled once the pandemic settles and it is safe to proceed