Pulmonary and Critical Care Medicine for Patients with Non-Cystic Fibrosis Bronchiectasis [Interview][Transcript]

Dr_Anne_ODonnell_Pulmonary-Critical-Care-NonCystic-Fibrosis-BronchiectasisGuest: Dr. Anne O’Donnell

Presenter: Neal Howard

Guest Bio: Dr. Anne O’Donnell is the Division Chief of Pulmonary Medicine, Critical Care, and Sleep Medicine. She is also the Medical Director of the Sleep Disorders Center at Georgetown University.

Segment overview: Segment 3. Dr. Anne O’Donnell, pulmonologist, talks about pulmonary and critical care medicine.

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, thank you for joining us today. Our guest is returning to speak with us about pulmonary and critical care medicine, she is the Division Chief of Pulmonary Medicine, Critical Care and Sleep Medicine, also the Medical Director of the Sleep Disorders Center at Georgetown University, Dr. Anne O’Donnell. Welcome back to Health Professional Radio doctor.

Dr. Anne O Donnell: Thank you.

N: We were here before in some other segments talking about NCFB, a rare chronic respiratory disease that’s characterized by dilation of the airways sometimes resulting in frequent exacerbation or flare ups and the chronic infections pretty much throughout the duration of this disease. When we were here before we talked a little bit about what NCFB is, some of the late stage options for treatment. Let’s talk about pulmonary and critical care medicine in general. Is this something that is always effective with NCFB or are there other avenues? And when it comes to NCFB, are there different types?

D: Yes, in terms of assessing the severity of non-cystic fibrosis bronchiectasis, it’s a work in progress to be honest. Our colleagues from the United Kingdom have developed what’s called the ‘Bronchiectasis Severity Index’, which is something that we can use to asses an individual patient in order to look at their prognosis over the next 3-5 years. There isn’t a true staging system for this disease because it is complex, the CT scan findings are a big part of how to prognosticate on an individual patient but the type of infection for patient have, has is also part of the picture how they going to do it. Probably the best thing we have right now is the thing called the BSI, the Bronchiectasis Severity Index. But it’s really still something we’re trying to develop and really make sure it’s applicable worldwide.

N: Are there are some aspects of this scale that are ready to be used now?

D: Well, one of the things in the scale is the presence or absence of the bacteria, ‘Pseudomonas Aeruginosa’. We actually know that if the patient is chronically infected in their airways with that particular bacteria, they do have a worse outcome, they’re more likely somebody’s who frequently need to take a systemic antibiotic.

N: As far as funding for research, have you found that there are some barriers sometimes with a rare disease, they don’t get the funding that some of the other more prevalent glamorous diseases might get. Is NCFB one of those this kind of on the bag burner as far as funding and getting to word out?

D: Yes, absolutely and I’m sure I’m not alone in my endless disease to say that. Because this is a disease as somewhat as you say rare so it’s also under the radar screen, it has suffered from a lack of funding. That being said we have benefited from some interests that’s really been generated by patients and patient advocacy groups, both patients with bronchiectasis and another group of patients who have bronchiectasis but are infected with non-tuberculous mycobacterium have developed advocacy groups that have at least started to push for more funding and our colleagues in the pharmaceutical industry have been interested and studying various therapeutics so that help to advance the field somewhat as well.

N: There are often many misconceptions and missed surrounding diseases especially those that are considered to be rare. What would you like to clear up as far as NCFB today while you’re here as being one of the main misconceptions that may even be affecting opinion and funding?

D: Well, first of all I think it’s really important for health care clinicians to recognize that patients who present with cough, frequent “bronchitis episodes,” needing frequent antibiotics might have bronchiectasis and hence the patients should have a CT scan to look for the disease. This is the disease that affects older individuals like greater than 60 years more than younger. But it actually spans the whole spectrum of age, so that in the patient with the right symptoms really need to be looked for. And I think more recognition of how challenging this disease is for patients in terms of the burden of the disease itself and then potentially the burden of the treatments that me we might recommend. It’s really important for us to advocate for the patients, I think to recognize this.

N: What type of a feedback do you get at different conferences or lectures when new information is presented?

D: It’s been very positive in the world of pulmonary medicine, our international, and our national, and our regional conferences have put more programming into bronchiectasis and also the non-tuberculosis micro bacterial infections that complicate the disease. I think the word is still not really out there very much in the primary care community and we’re working to change that as best we can.

N: As far as the pulmonary and critical care medicine goes, NCFB being as rare as it is does not mean it’s any less debilitating. What should someone expect who’s living with this disease?

D: Right. Again there’s quite a spectrum and some patients just have a daily cough and usually with some mucus production but sometimes they have an annoying dry cough. Patients with more disease, more advanced disease bring up sputum and so that can be quite debilitating to the patient and also I think something we physicians underestimated it’s kind of embarrassing for the patients to be chronically coughing and bring up mucus, that’s very troubling to patients. And then with more severe disease patients are short of breathe, have difficulty getting around, and just feel chronically fatigue and sometimes have difficulty holding onto their weight. And then once we put them on treatment, the treatments can be quite burdensome to the patient because a lot of the hallmarks of treating this disease involve exercise, using nebulizers, doing this airway clearance techniques that are quite time consuming for the patient.

N: And as far as centers that maybe devoted strictly to this disease, do you know of any that exist or are in the works?

D: Yes. There are a number of centers around the US that have been involved from the ground up and research in non-cystic fibrosis bronchiectasis and we have a consortium called the ‘Bronchiectasis Research Registry’ in the US where the entrusted centers that have been part of research programs for this. It’s not quite the same as in another diseases specifically cystic fibrosis where there’s really a well-grounded set of expand centers around the country. But we have this group of investigators and clinical researchers that are advanced in the field I would say and have specialty clinics for this. Pretty much all over the US.

N: What about offering education and sometimes support for caregivers who are non-medical in their capacity? The grown child of a patient or maybe even a friend or spouse. Is there anything that you’re aware of that can offer some support and information to the caregiver who is not a medical professional?

D: Yes, there are. Probably the group that sort of some of the spin off from bronchiectasis which is called the ‘Non-tuberculosis Mycobacterium Research’, advocacy group it’s NTMIR. It’s a patient advocacy group for patients infected with this particular bacteria. Almost all of whom have bronchiectasis and they’ve kind of spread over into the world the bronchiectasis. We’re actually hosting a conference in May here at Georgetown, that’s patient facing that’s bringing experts in the field together to address the needs of patients with bronchiectasis and related infection.

N: Now in wrapping up Dr. O’Donnell, what’s the one thing that you would like to say to other health care professionals when they encounter NCFB that would greatly reduce misdiagnosis?

D: Because it’s a very important to have that on your list of potential diagnosis when you see a patient who have a chronic cough. Particulars if they are producing sputum and particularly if they’ve been on multiple rounds of antibiotics and continue to have the cough. I think the basic recognition of the disease needs to be enhanced and then enthusiasm for treating this disease because it does involve working closely with the patient, and teaching them about like airway clearance also needs to be emphasized for the healthcare professional.

N: Great. Well Dr. O’Donnell, I thank you for speaking with us today.

D: Alright, great. Thank you.

N: Thank you, it’s been a pleasure. You’ve been listening to Health Professional radio, I’m your host Neal Howard with Dr. Anne O’Donnell. She is the Division Chief of Pulmonary Medicine, Critical Care and Sleep Medicine, also Medical Director of the Sleep Disorders Center at Georgetown University and we’ve been here talking about Pulmonary and Critical Care issues. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm, you can subscribe to this podcast on iTunes, listen in and download on SoundCloud.

Liked it? Take a second to support healthprofessionalradio on Patreon!