Fundraising

CF is a Multi-system disease that affects every area of your body and your life. Despite new drugs to “modify” the effects of this disease, management of CF is complex and time consuming (averaging 2-4 hours per day). As a result, CF continues to be one of the most difficult chronic conditions to manage. Studies measuring psychological distress in individuals with CF , and their parent caregivers, have found high rates of both depression and anxiety. Psychological symptoms in both individuals with CF and caregivers have been associated with decreased lung function, lower BMI, worse adherence, worse quality of life and more frequent hospitalizations. (Quittner AL, et al., 2015)

The TIDES study was an international study, sponsored by the CF Foundation and the European CF Society, which looked at the prevalence of anxiety and depression in CF.

• Screened over 6000 patients ages 12 and older and 4000 parents.
• Indicated higher rates for both depression and anxiety
• Higher rates of anxiety

Important Finding: When parents report elevated depressive or anxiety symptoms, their adolescent with CF is more than twice as likely to experience depression and anxiety (Quittner AL, et al., 2015).

A panel of experts worked together over 18 months to:

• Review the research
• Develop recommendations for clinical care

The Panel developed 15 recommendation statements for screening and treatment of depression and anxiety in individuals with CF and parent caregivers (Quittner AL, et al., 2015).

Consesnus Statement

Periodic screening of depression and anxiety symptoms and appropriate interventions can significantly improve quality of life and health of individuals with CF and their parent caregivers

• All CF Centers have been asked to provide ongoing support and education to all patients and families to promote stress management, health coping skills, etc.
• The Cystic Fibrosis International Guidelines Committee recommends the following for screening and treating depression and anxiety as part of comprehensive CF care:
  1. Learning new coping skills
  2. Getting screened
  3. Getting help
• All CF centers will initiate a screening program for anxiety and depression to include annual screenings during clinic visits conducted by the clinical social worker to all patients 12 years and offered to parent caregivers of patients 0-17 years old. (Parent/family screening is optional)
• PHQ-9 to screen for depression
• GAD-7 to screen for anxiety (Quittner AL, et al., 2015).
• Results will be reviewed with you in clinic and will fall into one of three categories:
  1. Normal Screening- proceed to get annual screening
  2. Mild Range- receive supportive intervention and will be rescreened at next visit
  3. Elevated range- receive clinical assessment and psychological and/or psycho-pharmacological interventions
• Recommendations include a stepped care model for anyone who is experiencing higher than average levels of depression or anxiety
• Recommendations also include detail on the types of therapeutic interventions that have been found to be the most effective
• Our center received a grant for three years to help fund a screening and follow up program. This gives us the ability to:
  1. Hire our social worker to work full time
  2. Hire a psychologist to help with counseling needs
• Screenings will be kept confidential and will be repeated annually when “normal” or more frequently if elevated
• We will work closely with you to get additional support

Click here for a patient and family guide to mental health and CF.

Guides to Help You

1. Guide for Families
2. The Depressed Child
3. What is depression