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Depression and Anxiety in Cystic Fibrosis Patients and Parents

A recent study of over 6,000 cystic fibrosis patients, ages 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 compared to the general population.[1] Although depression and anxiety are common in CF, the stigma associated with mental health issues often make people less likely to talk about them.  When left untreated, depression and anxiety can affect a patient’s ability to effectively manage his treatment plan.  CF patients with untreated depression, anxiety or both tend to have worse lung function and lower body mass index, in addition to experiencing more hospitalizations.

To address this issue, the Cystic Fibrosis Foundation (CF Foundation) announced newly developed guidelines for screening and treating depression and anxiety.  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.

“The psychology component of our cystic fibrosis program really makes CHOC stand out,” said Dr. 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.”

Dr. Amy Harrison

The program is a recent recipient of the CF Foundation’s grant, Implementation of the Depression and Anxiety Guidelines: Award for a Mental Health Coordinator. The grant provides CHOC the opportunity to have a psychologist at every CF clinic to help patients and families, and extends the CF social worker’s availability. 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 screening and treating depression and anxiety should become a routine part of CF care. The voluntary screening consists of completing a couple of short questionnaires.

Recommendations include:

  • All patients 12 years and older should receive annual screening for depression and anxiety.
  • Parents and caregivers of patients 17 years and younger 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.

Staying Well

Patients and caregivers who recognize the beginning signs of depression or anxiety should speak to their CF care team.  In partnership with the patient and/or family, CHOC’s team will recommend the appropriate interventions.

“CHOC wants to help patients and parents break their goals into manageable pieces and focus their energy where they would get the most ‘bang for their buck.’  Patients and caregivers are experts on their own lives, so this is truly a partnership to help families continue the strategies that work for them and make changes to those that don’t,” explains Adrianne Alpern, Ph.D., a postdoctoral fellow in CHOC’s pediatric psychology department and a member of the CF team.

The CF Foundation offers the following general guidelines to help mitigate the impact of depression and anxiety:

  • Talk with someone, preferably in person.
  • Spend time with people who lift your spirits.
  • Avoid alcohol and drugs.
  • Continue with your CF treatment plan.
  • Practice good sleep habits.
  • Spent 30 minutes outside each day.
  • Make time for things you enjoy.
  • Be physically active.
  • Practice relaxation techniques.
  • Avoid caffeine and cigarettes.

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.

CHOC’s 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 available to attend the appointment, if needed. Genetic testing and counseling can also be provided.

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

[1] Quittner AL, Goldbeck L, Abbott J, Duff A, Lambrecht P, Solé A, Tiboshc MM, Brucefors AB, Yüksel H, Catastini P, Blackwell L, Barker D. 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;69:1090-1097. doi:10.1136/thoraxjnl-2014-205983

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