What to Know About Telehealth for Cystic Fibrosis

Telehealth visit with mother and child

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Cystic fibrosis (CF) is a genetic condition that affects a protein in the body that makes mucus and sweat, leading to problems with the lungs and digestive system. If you or a family member is living with CF, you may be concerned about the risk of contracting COVID-19 and taking extra precautions to stay safe at home.

However, you might need to see a doctor to manage your CF or for another medical concern. In this case, telehealth could be a viable option for you to speak with your medical team.  

Telehealth visit with mother and child

chee gin tan / E+ / Getty Images

The Centers for Disease Control and Prevention (CDC) advises that people with CF might be at an increased risk for severe illness from COVID-19. People with CF who are immunocompromised due to a lung or other organ transplant are at increased risk for severe illness from COVID-19.

Telehealth is a way of communicating with your healthcare team through digital communications. This can be through videoconferencing, text messages, email, mobile health apps, and specially designed remote patient monitoring systems.

Telehealth During the Pandemic

The COVID-19 pandemic has caused an upsurge in telehealth. It offers a safe and convenient option to access health care. CF patients and their families report it is a successful and effective way to communicate with their medical team.

When to Use Telehealth for Cystic Fibrosis

You can use telehealth to speak to your doctor, nurse, or healthcare professional for non-urgent concerns about your CF. For example, telehealth can be used to:

  • Self-report new, non-urgent respiratory symptoms
  • Report and discuss lung function results (for those who have in-home lung function testing equipment)
  • Monitor your condition with at-home monitoring technology
  • Talk through your CF self-management plan
  • Go through breathing exercises with your healthcare team and discuss any problems with the exercises, clearance techniques, or clearance aids (such as a flutter or PEP mask)
  • Discuss any non-urgent issues, concerns, or educational matters about your CF
  • Meet your multidisciplinary team for a routine visit
  • Partake in a virtual exercise program
  • Ask questions about medication or refill a prescription
  • Meet with mental health or therapy professionals
  • Discuss other non-CF related, non-urgent healthcare problems such as a mild rash, pink eye, sore throat, ear infection, etc.

You May Need to Be Seen In Person If...

  • You need to submit a sputum sample.
  • Your healthcare professional needs to physically examine you (such as listening to your breathing or heart).
  • You need to have your vital observations measured (such as heart rate, blood pressure, or oxygen saturation).
  • You need to have lung function tests.
  • You require in-person support with chest physical therapy.

You should call 911 or go to the emergency room if you are experiencing any of the following symptoms:

  • Severe shortness of breath and unable to form a sentence
  • Fatigue due to increased effort of breathing
  • Severe non-stop coughing or wheezing
  • The skin between the ribs or just above the collarbone is getting sucked in with each breath
  • Drowsiness/difficult to rouse
  • Chest tightness, heaviness, or pain that spreads to your arms, back, neck, and jaw
  • New onset of blue fingers or lips
  • Coughing up mucus with more than a few streaks of blood

Benefits and Challenges

Research into using telehealth for CF is not as prevalent as with some other chronic conditions. The use of telehealth for CF has become more common during the COVID-19 pandemic.

Telehealth has been found helpful in offering care options that overcome many of the inconveniences and safety concerns surrounding in-person appointments. However, the level of monitoring and in-depth support often required in routine CF care means that telehealth is not always a viable option.

Self-management of CF can be intense and time consuming. With this in mind, studies have identified that remote monitoring and telehealth appointments might reduce the burden of CF care. However, remote CF management does rely on adherence from the person living with CF, and research shows that adherence levels vary greatly. 

Telehealth can work well alongside conventional health care for situations such as:

  • You need educational advice around CF but are not unwell.
  • You require advice on breathing exercises or using a clearance device.
  • You have difficulty physically attending an in-person appointment.
  • Your health is stable but it’s time for your routine CF appointment.
  • You are concerned about exposure to other viruses/COVID-19.
  • An in-person appointment is not required.
  • You have questions for your CF team, but do not have time to attend an appointment in person.
  • You have been unwell and would feel reassured from speaking to your CF team.
  • You require advice about your medication or a prescription refill.

Access to telehealth can vary depending on where you live and your insurance coverage. If you are unsure what telehealth options are available, speak directly to your CF team and insurance providers. 

How to Prepare for a Telehealth Visit for Cystic Fibrosis

If you are interested in exploring telehealth as an option for managing CF, speak to your CF or medical team. Questions to think about asking when you reach out to your team include:

  • Do you offer telehealth?
  • What telehealth options do you offer (e.g., video call, email, text, audio call, remote monitoring)? 
  • Can I speak to any member of the CF team, such as a doctor, nurse, physical therapist, mental health therapist, or pharmacist?
  • How do I schedule a telehealth visit?

If you have medical insurance, you can also contact your insurance provider to advise what telehealth options are available. It is essential, however, to talk to your CF team if you are thinking of changing medical providers—you’ll want to ensure that you still receive the same level of CF care and support.

It helps to be prepared for your telehealth appointment to ensure that you get the most out of it. Think about the concerns you have and any questions your CF team may ask you. For example, with regards to CF, the clinician may ask:

  • What new symptoms are you experiencing, and when did the symptoms start?
  • Has your sputum changed? Is it a different color, consistency, or is there more/less than usual?
  • Is your breathing different than usual? 
  • Are you wheezing?
  • Have you got a cough? 
  • Are you managing with your clearance device?
  • Are you managing your breathing exercises?
  • Are you having any problem with your bowel movements, or have your stools changed?
  • Are you having any digestive problems like constipation, bloated abdomen, nausea, or loss of appetite?

The clinician may also ask to see you using your clearance device or carrying out your breathing exercises. Therefore it is handy to have your clearance device with you for the call if you have one. 

Try to ensure that you have a private, quiet location to carry out the call with a strong phone/Internet signal. It is also helpful to make sure that you are comfortable using the technology required for a telehealth call and to check that it works before your appointment. 

Will Insurance Cover Telehealth for CF?

Due to the COVID-19 pandemic, telehealth coverage has expanded. However, insurance coverage varies, so you will need to speak to your insurance provider to see if they offer telehealth coverage. Being uninsured might affect telehealth availability.

There are laws in many states that require private insurers to reimburse healthcare providers for telehealth services. Some telehealth coverage is also offered by Medicare and Medicaid.

What Happens During the Visit

The reason for your telehealth visit will determine the structure of the appointment. For example, suppose you are having new respiratory symptoms. In that case, your CF team will likely ask you about the symptoms and may observe your breathing over the video call.

However, if your appointment is for a routine CF check-in, then it may be more of a general discussion about your treatment plan and to check that you are managing with your self-care routine. 

Regardless of the reason for your telehealth appointment, if you don’t understand something during the call, ask your clinician to explain or discuss the concern further. 

At the end of the call, the CF team or healthcare professional should explain the next steps. These might include:

  • If a medication is to be prescribed or refilled as a result of the call
  • Whether you need to attend for in-person tests such as lung function tests, an x-ray, or to provide a sputum sample
  • How to follow up on test appointments and results
  • If you need to make an in-person appointment with your CF team
  • If you can expect to continue using telehealth for future visits 

A Word From Verywell

CF management can be time consuming and challenging to juggle with everyday life. Therefore, telehealth for CF can be a valuable tool to help manage routine care and keep an eye on your overall health. If you are struggling to attend in-person appointments or need non-urgent advice about your condition, telehealth could be a viable option for you to consider. 

However, CF management can be complex, and telehealth is not always the best option. You will still need to attend some appointments in person. If you are interested in exploring telehealth to manage your CF, speak to your healthcare team about when telehealth might be an appropriate option for you. 

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Article Sources
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  2. Centers for Disease Control and Prevention. Cystic fibrosis. Updated May 2020.

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