How A Doctor Approaches Care for Patients with Cystic Fibrosis

 

While many patients are grateful for their doctors and treatments, how many know why they are so passionate about what they do? In an interview with Dr. Patrick Flume, MD for the Cystic Fibrosis Foundation, an adult cystic fibrosis patient gets to the bottom of a doctor’s perspective on cystic fibrosis care.

About Cystic Fibrosis

Cystic fibrosis (CF) is a progressive genetic condition causing respiratory and digestive system damage. Normally, the mucus created in the body is thinner and slippery. However, patients with CF have a thicker, stickier mucus. This leads to buildups of mucus throughout the body, which can cause breathing issues and infections, trap bacteria, and lead to lung damage and respiratory failure.

Thicker mucus also prevents the body from releasing digestive enzymes necessary to absorbing nutrients from food. Symptoms include constipation, stuffy nose, difficulty exercising, respiratory issues, and difficulty gaining weight. Cystic fibrosis can vary in severity. It is typically diagnosed at birth, and treatment includes antibiotics, anti-inflammatory medications, and exercise therapy. However, those with more severe CF conditions may require surgery to remove blockages or polyps, place a feeding tube, or have a lung transplant.

Learn more about cystic fibrosis on our site. 

A Doctor’s Perspective

Dr. Patrick Flume has a lot of experience treating patients with cystic fibrosis. As he should, since he has been studying the condition for 30 years! In addition to acting as a pulmonologist, Dr. Flume also heads the adult cystic fibrosis center at the Medical University of South Carolina. 

His interest in treating CF began during a fellowship at the University of North Carolina at Chapel Hill (UNC). During his time at UNC, he became interested in the social and medical implications of CF. He found that CF is unique in the way that the condition affects a large portion of the body. Additionally, he was able to speak directly to patients and their families. This direct contact made him realize how many patients craved more education about their conditions, which he now aspires to provide in every interaction.

Life with Cystic Fibrosis

When speaking with Savannah, the patient with cystic fibrosis, Dr. Flume acknowledges that life with cystic fibrosis has radically changed over the years, as has the way doctors interact with patients. He attributes this to two elements. The first is doctor-patient communication. The more he has worked with patients and their families, the better he has learned to listen, communicate, and delve deeper into some of the issues facing these patients.

As Savannah notes, many patients focus on treatments or advances in medicine, because they are clear, recognizable, promising, and tangible. However, effective doctor-patient communication has proven to improve patient outcomes while also providing a heightened level of support.

Additionally, he feels that advances in research, technology, and drug therapy have greatly improved patient outcomes. There are a multitude of new developments in clinical research for cystic fibrosis. As listed on the Cystic Fibrosis Foundation website, these include:

  • Strategies to develop anti-inflammatory medication to mitigate inflammation responses in patients
  • Conducting a GI Wellness Study to determine the gastrointestinal issues associated with CF
  • Addressing potential treatment options like theratyping, small-molecule screening, and the use of transfer ribonucleic acid (RNA).

Changes in CF Care

Dr. Flume once again explains that one of the most important changes in CF care is patient support. He references how in the past most cystic fibrosis programs focused on pediatric care and developing a community in that realm. Now, more programs for adult patients with cystic fibrosis are being formed.

By sharing data, encouraging patients to take part in and learn about research, and providing more support in the transition between pediatric and adult care, doctors are uniquely poised to better the lives of their patients in more than just a medical sense. For doctors to provide better care, Dr. Flume suggests holding conversations and actually listening – not just speaking to the room about the condition or treatment options.

Additionally, communication should take into account individual needs. This may mean implementing telemedicine as some patients need time to think about what they want; receiving a ton of information at once may be overwhelming.

Mitigating Anxiety

With all of the information being tracked, from weight to lung function, some patients worry about sharing information with their doctors out of fear of judgment. This is especially present when patients may not see changes or reductions in their numbers.

However, Dr. Flume wants to remind both patients and doctors that this is a partnership. To doctors, he also reminds them that they are not the ones taking the therapies, so to not get impatient for patients being treated. In the end, the best way to handle cystic fibrosis care is by developing trust between patients and their doctors, and communication plays a crucial role.


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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