Depression and Anxiety in Cystic Fibrosis Patients and Parents

A recent study of over 6,000 cystic fibrosis patients 12 years through adulthood, and over 4,000 parents, found that depression and anxiety were two to three times more elevated in patients with cystic fibrosis (CF) and in parents of children with CF. Although depression and anxiety are common in CF, the stigma associated with mental health issues often make people less likely to talk to about them.

To address this issue, the Cystic Fibrosis Foundation (CF Foundation) announced newly developed guidelines for screening and treating depression and anxiety. These guidelines are not a mandate from the CF Foundation to care centers, and they recognize that it will take time and effort for care center teams to adopt the recommendations.

CHOC Children’s  —  one of only a few affiliated care centers of the CF Foundation in Southern California and the only CF treatment center in Orange County — is one of the first care centers to adopt the recommended guidelines. At CHOC, we understand that living with CF and other chronic diseases can be emotionally challenging. We also know that depression and anxiety can have negative effects on physical health and the ability to follow a recommended treatment plan.

Dr. Amy Harrison, CHOC pulmonologist and CF specialist.
Dr. Amy Harrison, CHOC pulmonologist and CF specialist.

“The psychology component of our cystic fibrosis program really makes CHOC stand out,” said Amy Harrison, pulmonologist and CF specialist at CHOC. “Our multidisciplinary approach allows our care team to manage all aspects of CF from diagnosis to physical and mental health.”

CHOC is committed to ensure that every child in Orange County has access to mental health treatment without stigma or barriers, and we are pleased to be a recipient of the CF Foundation’s grant, Implementation of the Depression and Anxiety Guidelines: Award for a Mental Health Coordinator. The grant was offered to qualified care centers and allows the CF Foundation to collect best practices and disseminate them among all care centers.

The grant provides CHOC the opportunity to have a psychologist at every CF clinic to help patients and families. They will provide annual screenings, evidence-based interventions and follow-up care for depression and anxiety, as well as develop a community referral network of mental health providers.

Guideline Recommendations

The guidelines propose that just as measuring height, weight and PFTs are part of CF care, screening and treating depression and anxiety should become a routine part of CF care too. The screening consists of completing a couple of short questionnaires and is completely voluntary.

Recommendations include:

  • All patients 12 years and older should receive annual screening for depression and anxiety.
  • Parents of caregivers of patients aged 0-17 years should be offered annual screening for depression and anxiety.
  • A stepped process for prevention, screening, assessment and intervention. This can include talk therapy, medication or a combination of the two.

Referral to the CHOC Cystic Fibrosis Center

When a child is diagnosed or is suspected to have CF, a referral to an accredited CF care center can ensure that the child gets diagnosed properly, lives a long and healthy life, and receives treatment based on the most advanced research available. With access to a full range of CHOC pediatric subspecialists, the CHOC Cystic Fibrosis Center offers a number of life-enhancing technologies and treatments.

Our multidisciplinary CF clinic includes a board-certified pulmonologist and gastroenterologist, respiratory and physical therapist, nutritionist, nurse specialists, social worker and a psychologist. An endocrinologist and other specialists are also available to attend the appointment, if needed. Genetic testing and counseling can also be provided.

If you have a patient diagnosed with CF, or who has symptoms of CF, a pre-referral sweat test can be ordered at CHOC to confirm the diagnosis and refer for treatment. (CF Foundation guidelines recommend diagnosis confirmation by an approved CF Foundation care center.)

For appointments, please call the Patient Access Center at 888-770-2462 (888-770-CHOC).

Complete the CHOC Children’s Specialists Pulmonology Referral Request form located at http://www.choc.org/referralguidelines.

Fax ALL pertinent medical records to 855-246-2329 (855-CHOC-FAX).

To speak with a CHOC Children’s Specialists in Pulmonology, please call 714-509-8622.