#NACFC2021 – More Support Urged for ‘Stressed’ Patients With Anxiety

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by Marisa Wexler MS |

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People with cystic fibrosis (CF) who have mild depression or anxiety report heightened stress, with significantly lower scores on 10 of 12 measures of health-related life quality as compared with the general population of CF patients, new research shows. 

According to investigators, these patients may require more support — and specifically, possible individual interventions, such as talk therapy — than the current standard of care recommends. 

“These findings indicate that monitoring, psychoeducation, and support may not be sufficient for adults with CF with mild depression or anxiety, suggesting the potential value of interventions,” Anna M. Georgiopoulos, MD, a psychiatrist at Massachusetts General Hospital, said in a talk at the 2021 North American Cystic Fibrosis Conference (NACFC).

Georgiopoulos presented the research data in Perceived stress and quality of life in adults with CF with mild depression and anxiety” at this year’s NACFC, recently held virtually.

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Living with a chronic disease like CF can be stressful, and many people with CF experience mental health problems such as anxiety and depression. Current guidelines suggest that CF patients should be screened yearly for such problems, beginning at age 12. 

For those with mild scores for anxiety or depression, the guidelines suggest offering preventive education and support, with follow-up screening a few months later.

Notably, however, people with milder mental health symptoms have generally not been the focus of CF mental health research, Georgiopoulos said.

“Despite the potential for symptoms to persist and progress in severity, this at-risk group has been minimally studied,” she said.  

Georgiopoulos and her team, from institutions across the U.S., are conducting a clinical trial to test a CF-specific form of cognitive behavioral therapy — called CBT — in patients who have mild anxiety or depression. CBT is a form of talk therapy that works by “targeting emotions by changing thoughts and behaviors,” Georgiopoulos said. 

The CBT program being tested was developed by the researchers in collaboration with clinicians and adults living with CF. It covers “key topics and skills for living with CF, including relaxation, depression in CF, adaptive thinking, health-related goals, and anxiety,” she added. 

The team is planning to make trainings available next year to professionals in the field, which will outline how best to administer this CF-specific form of CBT, Georgiopoulos noted.

At NACFC, Georgiopoulos shared descriptive data for the 60 participants who are enrolled in the trial, which is funded by the CF Foundation.

The study includes adults ranging in age from 19 to 63. About two-thirds (65%) self-identified as female and 96.7% identified as white; 3.3% reported they were Hispanic or Latinx. 

“Our sample was highly educated, and most worked at least part time,” Georgiopoulos said.

Among the trial participants were a range of disease severities, with forced expiratory volume measures — a test of lung function — ranging from 16% to 124% of what is considered normal. A dozen patients (20%) had advanced disease, including five who had received lung transplants. 

Overall, the participants were “diverse in age and disease severity, but homogeneous in race and ethnicity,” Georgiopoulos said.

“This highlights an opportunity to provide equitable provision of accessible mental health interventions,” she added.

Mean scores on the Perceived Stress Scale were significantly higher in this group than reported for the general CF population, indicating higher stress. Similar results were found for both men and women. 

“The study found elevated symptoms at two to three times more frequently than expected in the community, with rates increasing from adolescence into adulthood,” Georgiopoulos said.

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Most of the participants had received some form of mental health treatment in the past. However, the majority (66.7%) had never received CBT or any similar individual therapy.

Half of the patients were actively taking medications for anxiety and/or depression, and another 25% had taken such medications in the past.

These data suggest that the patients’ mild scores for anxiety/depression “could reflect a partial remission” from a prior episode that was more severe, rather than a first episode of mental health problems, Georgiopoulos said. 

Similarly, on measures of health-related quality of life — measured via Cystic Fibrosis Questionnaire Revised (CFQ-R) — scores in 10 of a dozen areas were significantly lower (worse) among these CF patients compared with the values found in the general population of people with CF. The two exceptions were respiratory symptoms and weight, which, according to Georgiopoulos, may reflect better health in the era of CFTR modulators.

Further analyses of these scores indicated that patients with advanced disease tended to report their care as significantly less burdensome. Also of note, males tended to report significantly worse quality of life relative to weight than did females.

“Despite endorsing only mild symptoms of depression or anxiety, participants reported heightened stress and poor health-related quality of life in some domains,” Georgiopoulos concluded. 

The researchers are conducting a six-month follow-up phase to learn more. But these initial data, according to Georgiopoulos, “suggest the potential value of interventions, such as [CBT for CF patients], aimed at secondary prevention” and better long-term health.

Editor’s note: The Cystic Fibrosis News Today team is providing coverage of the virtual 2021 North American Cystic Fibrosis Conference (NACFC) Nov. 2–5. Go here to see the latest stories from the conference.


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