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How Does Cystic Fibrosis Affect Mental Health and Wellbeing?

Mental health among people with any chronic illness, including cystic fibrosis, remains an important part of maintaining long-term health and quality of life. That’s why regular mental health screenings have become a recommended part of treatment for cystic fibrosis (CF) for children ages 12 and older, their caregivers, and adults with CF.1

Health outcomes related to untreated depression or anxiety

According to the CF Foundation, people with CF and untreated depression or anxiety have worse health outcomes, including:

  • Are less likely to manage their treatment plans
  • Tend to have worse lung function and lower body mass index (BMI)
  • Face more hospitalizations
  • Frequently experience higher health care costs
  • Report a lower quality of life1,2

The frequency with which people with CF report depression and anxiety increases in the teen years. It remains high throughout adulthood, especially if additional complications like CF-related diabetes (CFRD), osteoporosis, and liver disease are present.

How common is depression or anxiety in individuals with cystic fibrosis?

The psychological challenges of CF on children, their parents, and adults with CF are well known. A large U.S.-European study recently found that 10% of teens with CF experienced depression, 19% of adults with CF, and 37% of mothers and 31% of fathers. Anxiety was found in 22% of teens with CF, 32% of adults, 48% of mothers and 36% of fathers. These results were two to three times higher than those in the general populace.3

The study also found that teens whose parents reported depression or anxiety were more likely to have symptoms of these mental health issues too.3

While depression and anxiety are separate conditions, there can be overlap. The CF Foundation found that among people with CF who report either anxiety or depression, 40.2 percent experienced both.4

Interestingly, depression and anxiety are experienced equally across all CF genetic mutation classes unlike other complications like liver disease, CFRD, or pancreatitis which seem to be tied to particular mutations.4

How to recognize signs and symptoms of anxiety

The symptoms of depression and anxiety may overlap, but there are some distinct differences between the two conditions. The mental and physical signs last for at least six months and may include some combination of:

  • Constant or obsessive worrying
  • Restlessness
  • Irritability
  • Muscle tension
  • Headaches
  • Sweating
  • Difficulty concentrating
  • Trouble falling asleep or staying asleep
  • Fatigue
  • Trembling
  • Startling easily1

Children and teenagers may worry too much about their disease as well as their performance in school or sports, being on time, natural and human-made disasters, or getting others’ approval.1

How to recognize signs and symptoms of depression

Depression is complex and can include many physical and mental symptoms. The general rule is that if you or your child experience five or more of the following symptoms for two weeks or longer, you should ask for help:

  • Sadness
  • Loss of energy
  • Feelings of hopelessness or worthlessness
  • Loss of enjoyment in things you or your child once liked
  • Problems concentrating
  • Uncontrollable crying
  • Problems making decisions
  • Irritability
  • Sleeping more than usual
  • Trouble falling asleep or staying asleep
  • Unexplained aches and pains
  • Stomach aches or other digestive issues
  • Loss of interest in sex
  • Sexual problems
  • Headaches
  • Loss of appetite and weight loss
  • Weight gain
  • Thoughts of suicide
  • Suicide attempts1

Treatment for depression and anxiety

It can be hard for someone to distinguish between depression, anxiety and the general side effects of CF, such as tiredness or sleep troubles. That is why it is important to be open about how you are feeling with your care team.
There are many treatments to help with these mental health issues, and it usually takes a combination approach to treat depression and anxiety such as:

  • Talk therapy or cognitive behavioral therapy
  • Medication
  • Daily exercise
  • Spending time outdoors each day
  • Spending time with people you enjoy
  • Relaxation techniques
  • Practice good sleep habits

Self-care techniques can also work wonders to help with depression and anxiety such as avoiding alcohol and drugs and sticking to your CF treatment plans.

Written by: Jessica Johns Pool | Last reviewed: September 2019
  1. Cystic Fibrosis Foundation. Emotional Wellness. Available at: https://www.cff.org/Life-With-CF/Daily-Life/Emotional-Wellness. Accessed 5/2/2019.
  2. Duff AJA. Depression in cystic fibrosis; Implications of The International Depression/Anxiety Epidemiological Study (TIDES) in cystic fibrosis. https://doi.org/10.1016/j.prrv.2015.07.006. Accessed 5/2/2019.
  3. Quittner AL, Goldbeck L, Abbott J, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014 Dec;69(12):1090-7.
  4. Cystic Fibrosis Foundation. Patient Registry Annual Data Report 2017. Available at: https://www.cff.org/Search.aspx?topic=230. Accessed 5/2/2019.