I left plenary 3 at NACFC, "There Is No Health Without Mental Health," energized by the idea of including emotional wellness in the care for people with cystic fibrosis and their parent caregivers. At the session, Alexandra Quittner, Stuart Elborn and Beth Smith, three members of the guidelines writing committee, announced the publication of guidelines for screening and treating depression and anxiety and explained how the guidelines were developed. The session's three presenters were part of a writing committee that brought together an international team that included mental health experts, three parents of children with CF and an adult with CF to provide guidance on making screening and treating depression and anxiety a part of routine CF care. Although adapting CF care to include the recommendations in the guidelines will take time and effort, the care center teams that do so will be providing an example of comprehensive care to the health professionals who treat other chronic diseases.
The guidelines propose that just as measuring height, weight and PFTs are part of CF care, screening and treating depression and anxiety should become a routine part of CF care too. Although it will be a significant change for care teams at first, screening for depression and anxiety should not change the care center experience for patients and parent caregivers much at all. Completing a couple of short questionnaires will take only a few minutes and is completely voluntary.
Including emotional wellness in CF care is necessary.
We have known for years that people with chronic diseases are more likely to experience depression and anxiety. Dr. Quittner emphasized this point while presenting the results of the TIDES study, the largest international study for screening people with a rare, chronic illness.
TIDES showed that depression and anxiety are two to three times greater among people with CF and family caregivers than the general population. We also know that depression and anxiety have very real and negative effects on physical health, which is why these conditions need to be addressed as part of CF care.
In addition to presenting the scientific reasoning that led to the guidelines, the plenary session also featured videos of people in the CF community who have struggled with depression and anxiety. Andy Lipman, an adult with CF, and Kat Quinn, who has a daughter with CF, both talked honestly about the emotional burden of CF and how important it is to identify and treat depression and anxiety. Their testimonials put a human face to the research and showed what the statistics could not — how depression and anxiety affect the CF community, why these guidelines are so necessary and why making them part of routine CF care must be a priority.
The guidelines represent a good first step in making emotional wellness a part of standard CF care. This will not be an easy step for care teams. These guidelines are not a mandate from the CF Foundation to care centers. Implementing them will take time, effort and resources. It also will take commitment, but my sense from those at the plenary is that the commitment is there.
Although people with other chronic diseases struggle with anxiety and depression, screening and treating depression and anxiety is not a part of their care. By screening and treating depression and anxiety now, CF care will be the model for other chronic diseases. I believe that once we do, others will follow our lead.
Creating the guidelines was a bold statement that showed we mean to provide the most comprehensive, coordinated care we can. We in the CF community should take the energy and excitement generated by plenary 3, roll up our sleeves and get to work creating the model of care that others will follow.
If you did not have the chance to watch this plenary live, watch a recording of the third plenary here.