Smith Honored by Cystic Fibrosis Foundation for Mental Health Work

The award shines a spotlight on the significance of mental wellness to the overall health and well-being of those living with cystic fibrosis and on the important work of researchers and care teams to address mental health as an integral part of standard CF care.

First presented in 2016, the award is given to a member of the CF community who displays leadership and a commitment to the mental health and well-being of individuals with CF.

“It is gratifying that there is now an award to recognize mental health work in CF,” says Smith, who is also a clinical associate professor of pediatrics. “It helps to validate that mental health and well-being are as equally important as physical health. It’s a proud moment for all of us in mental health.”

Smith notes there is a borrowed saying she and her colleagues often use: “There is no health without mental health.”

The idea that one cannot just target the physical health of an individual began to resonate with Smith during her residency and continued during her child and adolescent psychiatry fellowship. 

Smith made a number of connections with specialists during her fellowship rotations. One of them was pulmonologist Daniel W. Sheehan, MD, PhD, clinical associate professor of pediatrics and associate dean for medical curriculum.

“We had a lot of shared interests and thoughts about how mental health affects physical health,” Smith says. “He really introduced me to CF, which is a multi-systemic illness, and one of the toughest, in that the treatment regimen is so complex and lifelong.”

“There are a lot of people who may have complex regimens, but they are in and out of it, such as a cancer treatment,” she adds.

Smith and Sheehan focused on how much time each day people with CF must spend in treatment and began to wonder how they coped.

“We wondered what the qualities were that enabled someone to take that on,” Smith says. “We also looked at the things that made it more difficult because we figured we could use data from both the successful and unsuccessful outcomes.”

Smith received a grant from the American Academy of Child & Adolescent Psychiatry to look at the effects of depression on adherence to treatment, both for children and their parents.

“We looked at their adherence to airway clearance, which can sometimes take up to 50 minutes a day,” she says. “What we found was that children who were depressed were much less likely to do the treatment regimen and actually were more likely to do zero. It was astonishing.”

Smith also notes the study found when the parents were depressed, the children were also much less likely to do treatment, perhaps due to lack of supervision or lack of access to treatments.

“It was one of the first studies in CF that looked at children and depression and it looked at children as young as age 8,” she says.

Smith says one of the most telling outcomes of the study was finding the rates of depression among children with CF were three times greater than among healthy children in the general population.

The inaugural recipient of the CF mental health award was Alexandra L. Quittner, PhD, a professor of psychology at the University of Miami who is internationally known for her work in the field and who conducted one of the largest studies ever on depression. Quittner’s study looked at links between depression and CF in nine countries and Buffalo was one of the sites included.

“She is a mentor of mine and now a colleague and friend,” Smith says. “I am so proud to even be considered in the same category as her.”

Quittner’s study showed the rates of depression among CF patients are consistently two to three times the rates in the general population.

Following the study, the CF Foundation formed an international committee to create expert guidelines. Smith was asked to serve on the committee and lead a subgroup on screening. 

After the guidelines were published in 2015, Smith was named to lead a task force that looked at ways to implement them.

“The Foundation encouraged both practical and pie-in-the-sky ideas,” she says. “They asked us to think about what we would like to see done, without worrying about other constraints.”

Having worked with David L. Kaye, MD, professor of psychiatry, in the Child and Adolescent Psychiatry for Primary Care program, Smith says she always had collaborative care in the back of her mind.

“I talked to the task force about the idea of embedding a mental health coordinator onto a health care team,” she says. “The teams are already very multidisciplinary. They often have a nutritionist, a pulmonologist and an endocrinologist. Why not have mental health disciplines be a part of that to help coordinate screenings and referral?”

The CF Foundation found the idea to have merit and provided funding in the first year for 80 CF centers nationwide to hire mental health coordinators.

Smith was subsequently asked to chair a mental health advisory committee formed by the CF Foundation to help sustain the initiatives. The committee now has three subgroups: education and training, collaboration, and research.

While Smith was working on the international guidelines, she was also collaborating with the Oishei Children’s Hospital Cystic Fibrosis Center to study how depression screening could be implemented.

“It really helped set the tone for how this might be done in a center,” she says. “The screening tools we recommended internationally are the ones we started with here in Buffalo. Many of the tools we developed here to help with implementation are now used worldwide.”

“As we were doing this, we wrote everything down, essentially creating a ‘how-to’ guide in a shared file and we gave access to anyone who requested it,” Smith says. “Over time, an exponential amount of material has been added.”

Key collaborators at the Oishei CF center are:

• Danielle M. Goetz, MD ’03, clinical assistant professor of pediatrics and a pediatric pulmonologist who is director of the center
• Carla A. Frederick, MD ’05, clinical assistant professor of medicine, who specializes in pulmonary and critical care and is adult program director of the center

“They have been instrumental co-investigators on the depression project in CF and without their buying into the importance of mental health in CF care and integrating this important research into their center none of the efforts would have gotten off the ground,” Smith says.

Smith says she has been very fortunate to have been placed in leadership roles to advance knowledge of depression and CF and to be involved in the writing and publishing of expert guidelines to enact changes in health care protocols.

“It is important for health care providers to ask CF patients not only how they are feeling physically, but to also inquire about their mental well-being,” she says.

“It is about removing the stigma of depression; teaching patients not to apologize for it because this might be part of their illness.”

Smith received the award at the 2017 North American Cystic Fibrosis Conference in Indianapolis. The award is named in honor of C. Richard Mattingly, former chief operating officer of the CF Foundation, and his wife, Carolyn.