Depression in people with cystic fibrosis is 2 times higher than in the general population and among their caretakers, 3 times higher. The toll on treatment adherence is significant.
Caring for CF is demanding. CF is the most common genetic life-limiting condition among Caucasians. Treatment can take up to 4 hrs/day. Studies suggest that up to 30% of children, teens, and adults with CF may experience depression and that rates are similarly high among caregivers of individuals with CF.
The International Depression Epidemiological Study (TIDES). “[TIDES] is the largest psychological screening study conducted in a chronic respiratory disease, with data collected from both European countries and the USA,” wrote lead study author Alexandra Quittner, PhD, senior scientist, Miami Children's Research Institute.
Depression in individuals with CF: 2x higher than rates in the general population.
Depression in caretakers: 3x higher in caretakers than general population
Anxiety in individuals with CF and caretakers: 2 to 3x higher vs general population.
1286 teens (mean age 15y), 4739 adults with CF (mean age 29y)
3127 mothers, 975 fathers of younger children with CF
Mothers at high risk for depression/anxiety. Depression symptoms: 10% of teens, 19% of adults, 37% of mothers, 31% of fathers. Increased anxiety: 22% of teens, 32% of adults, 48% of mothers, 36% of fathers. Results suggested that anxiety may increase symptoms of depression.
Participant characteristics predictive of depression and anxiety among adolescents and adults with CF and parents of young children with CF.
Offspring at risk for poor mental health. Having a parent with depression/anxiety may double the odds of these problems in offspring with CF. Analyses of 1122 parent-teen pairs showed that teens whose parents had symptoms of depression were >2x as likely to also report depression (OR=2.32) vs teens of parents without depression.
Note: The authors acknowledge several limitations of the study. For example, individuals with severe CF may have been less likely to participate, so the study may underestimate rates of anxiety and depression in individuals with CF and their caretakers
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Clincians who care for children, teens and adults with cystic fibrosis (CF) should annually screen for depression and anxiety in these patients, as well as in their parents/caretakers. This was the conclusion of a landmark study on the prevalence of mental health challenges in the CF population first published in the journal Thorax in December 2014.The study, led by Alexandra Quittner, PhD, senior scientist, Miami Children's Research Institute, formed the basis for guidelines released by the Cystic Fibrosis Foundation and European Cystic Fibrosis Society in 2015, which recommend annual screening and treatment for depression and anxiety in teens and adults with CF, as well as their caretakers.The short slide show below highlights the pivotal research and links to a quiz on best practices outline in the guidelines.