Medical Professional Publications

A Parent/Caregiver Perspective of the 2016 North American Cystic Fibrosis Conference

By David Hoffman
Member Nationwide Children’s Hospital Parent Family Advisory Board

What a valuable experience the conference provided, reminding me that our families are connected to a vast community of physicians, nurses, social workers, nutritionists, researchers, respiratory therapists, pharmacists, other care providers, patients and families whose goal and aim is to find curative means to help those with cystic fibrosis to live stronger and longer lives. Well over 4,500 people attended the conference from around the world, October 27-29, 2016 in Orlando, Florida. It was great to connect with many parents and caregivers who attended from all across the United States.

While attending the conference, I was reminded of the importance of what each of us do on a daily basis — day in and day out —which ultimately makes a difference. Yes, the mutations that cause cystic fibrosis play the strongest role in defining the disease; but what we do with the disease and its affects plays an equally strong role.

I attended many sessions with different members of the care team from Nationwide Children’s Hospital, including those with an emphasis on mental health, nutrition, the evolving healthcare landscape, and airway clearance techniques. 

Sessions in which I attended on mental health sought ways to adequately screen and provide resources and referrals for patients living with anxiety and depression and the impact that mental health has on the quality of life for patients and families. One of the sessions discussed the need to also screen parents and caregivers, offering self-screening programs as a viable option. Another session talked about the need to overcome the feelings of isolation for those living with cystic fibrosis — especially with regard to the necessary reality of infection control. It was great to hear about studies that showed that most patients were open and receptive to mental health screening and many in the cystic fibrosis community stating that “it was about time” to focus in on mental health especially the depression and anxiety that most — if not, all — patients experience. It was great to debrief this session with our pulmonary social workers who were able to attend NACFC.

The session on the changing healthcare landscape examined the on-going need to advocate for health care insurance coverage for those who have both public and private health insurance. As an advocate at both the state and federal level for healt hcare for those living with cystic fibrosis, I have already begun to see changes especially around the conversation of value and outcomes. This is one reason why adherence to treatments, medications and therapies is so important for those living with cystic fibrosis. 

I was reminded in the sessions as well as stopping by the Cystic Fibrosis Foundation’s (CFF) exhibit of the value of the Compass program which helps locate resources for those whom are having insurance coverage issues. Information on Compass can be found at www.cff.org.

The airway clearance session was informative in regards to the need to tailor airway clearance techniques with the patient. The necessity of huff coughing cannot be emphasized enough! The importance of exercise was also emphasized, as was adherence techniques. If you have questions about what is right for you please talk with your physician and respiratory therapist.

The session on nutrition reminded me of many things that I have forgotten over the years since our daughters were first diagnosed. Tips and techniques were discussed around calcium, sodium, enzymes and fat consumption with modulator drugs like Kalydeco® and Orkambi®. I was reminded that athletes need to monitor and likely add more sodium to their diets especially during the summer months. I plan on talking with our nutritionists about this at our next visit.

One plenary session talked about the drug pipeline and that 50 studies are currently or will soon be taking place. This is unprecedented work. This session included hearing from two adults living with cystic fibrosis and a parent via skype about the value of research and the ways that it is making a difference. All of those with cystic fibrosis need to consider participating in a clinical trial to further this work. Talk with your physician and/or visit cff.org to find out if you are eligible to participate.

The last plenary session talked about the CFF Patient Registry. This, too, was very informative and talked about the ways that this data can help researchers, care centers, and clinicians make timely decisions about the care and effectiveness of treatment. The data can help spot trends for the patient, care center, and at national and world level. It was overwhelming to see the advances in life-span and treatment throughout the years. 

Over the last several years, the CFF has restated and centered its commitment to involving patients and care-givers in all levels of decision making throughout the organization, including research. It is now our opportunity, more than ever, to take advantage of the invitation to partner at all levels from care decisions between the patient and care provider, between patients/families and the care center, between patient/families and the local CFF chapter, and between patient/families and the CFF. I encourage you to seek out opportunities to become involved.

Thank you again for the opportunity to represent the Patient Family Advisory Board of Nationwide Children’s Hospital at the 2016 NACFC. I look forward to the on-going conversations.

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