Cystic fibrosis (CF) is a progressive, multi-system pulmonary disease, affecting approximately 30,000 individuals in the United States1
. Living with CF, which requires adhering to a complex and time-consuming treatment regimen, affects health-related quality of life2–3
and places patients at increased risk for depression4–5
. Depression is a common psychiatric diagnosis, with lifetime prevalence rates of 10% in adolescence6
and 16.6% in adults7
. Prior studies, which have limitations, suggest that rates of depression in adolescents and adults with CF are significantly higher than those of the general population, ranging from 11–14.5%8–9
for youth and 29%–46%8,10
for adults. Furthermore, subclinical symptoms of depression (e.g. scores lower than clinical cut-offs for screening measures) have important implications and are associated with psychosocial dysfunction, functional impairment, and future episodes of major depression in the general population 11
. However, little is known about the continuum of symptoms of depression for individuals with CF.
A recent report by the US Preventive Services Task Force (USPSTF) recommended the routine screening of adolescents for depression within primary care settings12
. Given that CF teams often see patients with CF on a quarterly basis, it seems reasonable that this type of screening could be conducted within routine CF clinical care. The early screening and identification of depressive symptoms is important because studies have shown that age of onset is decreasing. Furthermore, once a depressive episode is experienced, the likelihood of relapse is high13
, placing children and adolescents at increased risk throughout their lifetime. Depression also impedes adherence to medical regimens14
, thereby potentially increasing morbidity in patients with CF. Similarly, increased depressive symptoms are associated with poorer lung function in children and adults with CF2,15
. Thus, routine screening of depressive symptoms during clinical encounters could result in earlier detection, further assessment, and intervention.
Given the high comorbidity between depression and anxiety16–19
, assessment of anxiety symptoms is also important5
. Some studies suggest normative levels of anxiety in adolescents15
with CF, whereas others indicate clinical elevations8,21
. Unlike depression, low/moderate levels of anxiety may serve as a protective factor for long-term health. Specifically, recent evidence suggests that adherence is higher for patients with CF exhibiting anxiety symptoms21
. Given the USPSTF recommendations, one goal of the current study was to use a single screening measure to assess self-reported symptoms of depression and anxiety in patients with CF during routine clinic visits.
Limitations of prior studies of depression and anxiety in CF include use of measures/interviews that incorporated overlapping symptoms of depression and physical symptoms of CF (e.g., somatic items such as fatigue or loss of appetite)21
, restricted age ranges, and assessments that occurred before the development of new CF therapies (e.g., ThAIRapy vest, inhaled antibiotics) in the United States 8–9
. The latter point is especially salient because it is unclear how the additional burden of new treatments affects symptoms of depression and anxiety. For example, the initiation of inhaled antibiotics and mucolytics may increase treatment time by 20–30 minutes and decrease recreation22
, which may lead to less interaction with peers. In contrast, treatment benefits could reduce physical symptoms and morbidity (e.g., pulmonary exacerbations), resulting in improved overall physical and psychological health.
Finally, mothers of children/adolescents with chronic illnesses are at increased risk for depression23
with high rates in caregivers of children with CF between birth and 18 years of age (e.g., 36–44%)24
. Research has demonstrated that children of depressed caregivers are at increased risk for depression compared to children of non-depressed caregivers25
. In addition, caregiver depressive symptoms have been linked to poor health outcomes for adolescents with other pediatric conditions, including asthma26
. These children are also more likely to exhibit broad psychosocial impairments in adulthood (e.g., anxiety)28
. This intergenerational association of symptoms of depression and anxiety has not been studied in CF.
The objectives of this study were to: 1) document symptoms of depression and anxiety for individuals with CF (≥ 12 years) and compare with norms, 2) examine differences in symptoms of depression and anxiety by sex, age, and lung function, and 3) determine the association between adolescent and caregiver symptoms of depression and anxiety. Adolescents and young adults with CF were expected to report more symptoms of depression and anxiety compared to normative data. It was hypothesized that symptoms of depression and anxiety would be higher for individuals with more severe lung disease and for those who were older and female. Furthermore, a strong positive association was expected between patient- and caregiver-reported symptoms of depression and anxiety.