CF Research Shows Importance of Mental Health
Dr. Alexandra Quittner shares her
latest research findings on cystic
fibrosis and mental health.
Most cystic fibrosis care focuses on treating problems with the lungs and pancreas. But Dr. Alexandra Quittner is evaluating a much less-studied area of CF care that is also vitally important to the well-being of people with CF — mental health.
Dr. Quittner studies the mental health of people with chronic diseases and their caregivers to understand how depression and anxiety affect overall health. Quittner, a professor of psychology at the University of Miami, heads the international TIDES study (funded by the CF Foundation), the first study of its kind, screening people with cystic fibrosis and their caregivers for mental health issues like depression and anxiety.
Dr. Quittner sat down with Connections to share what she and her research team have learned about CF and depression so far and how their work could help people with CF stay healthy.
Why do you study cystic fibrosis and mental health?
In other chronic diseases like heart disease and diabetes, there is a great deal of evidence showing people are at a greater risk for depression than people who don’t have a chronic illness. But the connection between cystic fibrosis and depression has only been studied with a small number of patients. This is the first study to assess whether people with CF are at a greater risk for depression and anxiety. We are looking at data from more than 35 CF care centers to examine the connection between CF and mental health, as well as its implications for treatment.
How many people with CF experience depression?
Depression is a common symptom among the CF population. We have found that one in three patients twelve years old and younger have high levels of anxiety and about 11 percent have symptoms of depression. In adult patients, about 36 percent are anxious and 11 percent have elevated symptoms of depression.
For family caregivers, the statistics are even higher. We found that more than half of mothers of children with CF have elevated levels of anxiety, and 24 percent of moms had elevated symptoms of depression. These rates are much higher than in the general population.
What are the causes of anxiety and depression in people with CF and their caregivers?
There is no single cause of depression — for the general population — or for people with cystic fibrosis. However, some of the issues that people with CF and their caregivers face may be contributing factors.
In any complex chronic condition that requires a time consuming treatment regimen and the potential for health to worsen, symptoms of anxiety and depression are more common. In CF, treatments can take two to four hours per day, making it difficult to balance the things you want to do and also manage your disease.
Because CF is a deteriorating condition, people with the disease and their families often struggle to cope with the uncertainty of the future. I think some level of stress or anxiety is, at times, to be expected. In other words, it is not a sign of a medical condition, but a normal response to a very difficult situation.
What do higher rates of anxiety and depression mean for those with CF?
A person who feels overwhelmed, anxious or sad may not adjust well to the CF diagnosis. We’ve found that people with CF who are depressed are less likely to adhere to their treatments.
In addition, if you have a lot of anxiety, you may be less able to take care of yourself or your loved one. Too much anxiety, particularly in caregivers, can be very draining and exhausting.
Can you measure the effects of depression on a patient’s health?
Yes. So far we’ve found that parent caregivers who are depressed tend to give enzymes less frequently to their children and school-age and adolescent children with CF were less likely to do their airway clearance. A study of adults, by my colleague Dr. Riekert, found that adults with elevated symptoms of depression also reported worse quality of life.
In other chronic diseases, depression is associated with missing clinic visits and doing fewer prescribed treatments. We’re just beginning to make those connections for cystic fibrosis.
How should mental health be addressed in CF care?
I think mental health should be part of annual screening for patients and caregivers. We have very good screening tools that take less than five minutes to complete. Not all will need or want assistance, but by alerting them to these emotional challenges, we can let people with CF and their caregivers know that it’s okay to seek some additional support or counseling if they need to. Even if depression is not an immediate issue, care providers should acknowledge this as a potential part of cystic fibrosis. It’s worth a conversation.
How could CF care centers best help those who experience depression?
My message is that symptoms of anxiety and depression are common and part of coping with a chronic illness. We have effective treatments for these mental health issues and need to make these treatments available to our patients and caregivers.
You don’t have to feel badly if you’re experiencing symptoms of depression and anxiety — you are not alone! With CF, people face nutrition and lung issues — and sometimes, they experience symptoms of depression and anxiety. We need to treat the whole person, and mental health is an important part of CF care.
back to top