1. THE ROLE OF PSYCHOLOGY IN CYSTIC FIBROSIS CLINIC DR. DIANA NARANJO, PHD CLINICAL ASSISTANT PROFESSOR OF PSYCHIATRY & BEHAVIORAL HEALTH SCIENCES

2. WHY I’M HERE  Dramatic improvements in prognosis, treatments and life expectancy in CF;  However, arduous treatment regimens, and still early mortality impacts psychological health  There is a complex relationship between psychological health and physical health.  Those with respiratory disease have an increased risk for co-morbid anxiety and depression A.J.A. Duff et al. / Journal of Cystic Fibrosis 13 (2014) 745–753 CF Trust. Annual data report 2010. https://www.cysticfibrosis.org.uk/media/108230/CR_Annual_Data_Report_2010_Dec_11.pdf; Dodge JA, Lewis PA, Stanton M, Wilsher J. Cystic fibrosis mortality and survival in the UK: 1947–2003. Eur Respir J 2007;29:522–6. Sawicki GS, Sellers DE, Robinson WM. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. J Cyst Fibros 2009;8:91–6. Evans DL, Charney DS, Lewis L, Golden RN, Gorman JM, Krishnan KR, et al. Mood disorders in the medically ill: scientific review and recommendations. Biol Psychiatry 2005;58:175–89.

3. NEW GUIDELINES FOR MENTAL HEALTH  Promote high quality mental health care for persons with cystic fibrosis and their caregivers.  The pathway includes  1)primary prevention including development of coping skills,  2)active annual screening for symptoms of depression and anxiety,  3)clinical assessment by a trained healthcare provider, and  4)active intervention for individuals with symptoms of anxiety and/or depression.

4. A LITTLE ABOUT PSYCHOLOGY  Psychologists can be…  Researchers  Clinicians  Educators  Psychologists can’t…  Manage your child’s medications  Make everyone feel better all the time  Perform spooky/mystical miracles

5. A LITTLE ABOUT ME  Research experience  Clinical experience  Teaching experience

6. A LITTLE ABOUT DEPRESSION

7. SYMPTOMS OF DEPRESSION  Emotional  Feeling “miserable,” experiencing little pleasure  Motivational  Lacking drive, initiative, spontaneity  Behavioral symptoms  Less active, less productive  Cognitive symptoms  Negative views of self, blame self for neg. events, pessimism  Physical symptoms  Headaches, dizzy spells, general pain

9. CYSTIC FIBROSIS AND DEPRESSION Review Depression in cystic fibrosis; Implications of The International Depression/Anxiety Epidemiological Study (TIDES) in cystic fibrosis Alistair J.A. Duff 1,2 1,2 1 Consultant Clinical Psychologist, Leeds Teaching Hospitals NHS Trust, Leeds, UK 2 Honorary Clinical Associate Professor, University of Leeds, Leeds, UK S U M M A R Y Children and adults with chronic diseases, as well as their parents, are at increased risk for depression. Where people with CF do exhibit psychological distress it is linked to poorer adherence and pulmonary function, increased hospitalisations and healthcare costs and decreased quality of life. The International Depression Epidemiological Study (TIDES) evaluated depression and anxiety in CF patients and parent caregivers across eight European countries and the USA. Two national and one international data sets have been published. This paper summarises the findings, offers explanations for differences in results, and outlines the clinical implications with consideration given to if and how recommendations could be integrated into managing CF in the UK. © 2015 Elsevier Ltd. All rights reserved. TIDES data have established that, at least ‘on the balance of probabilities’, conservative measures of depression show elevated rates of low mood in people with CF and parents. Is screening for depression and anxiety justified? That depression has been associated with decreased adherence, pulmonary function and quality of life, as well as increased hospitalizations and healthcare costs, only serves to further underpin the imperative that CF teams are alerted to clues that depression in patients and parents may be present.

10. A LITTLE ABOUT ANXIETY

11. FEAR VS. ANXIETY

12. FEAR VS ANXIETY  Fear vs. Anxiety?  Fear = alarm, response to known, real threat  Anxiety = alarm, response to vague sense of threat  Common physiological features:  Increased respiration, perspiration, muscle tension

13. DEPRESSION & ANXIETY IN PARENTS  Rates of depression among parents of children with CF about 20-37%, 2-3 times higher than rates of depression in the community

14. FAMILY FINDINGS  Optimal disease management and better health outcomes relate to:  Better family communication  Parents remaining involved in medical care  Not transferring responsibility until child is developmentally ready  Low levels of medically specific family conflict

15. SO WHAT TO DO?  Just be happy!  Just stop worrying!

16. STRATEGIES TO REDUCE DEPRESSION & ANXIETY & INCREASE ADHERENCE  Annual screening  Connecting with local resources  Brief evidenced based therapies in clinic  Exposure, relaxation training, play therapy  Encouraging behaviors that parents want to grow  Shaping  Reinforcement

17. SCREENING  We are piloting a program to automate screening for depression and anxiety using iPads  All parents will be screened  All teenagers and young adults will be screened  Many younger children will be screened

18. CONNECTING TO LOCAL RESOURCES  SW & Psych will continue to work together to link families with local mental health resources  Begin compiling list of preferred local resources  Develop trainings on CF for community mental health

19. EXPOSURE, RELAXATION TRAINING, PLAY THERAPY

20. IN SUM  Psychology is now an integrated part of your CF team  We will be working together to prevent, screen, and treat mental health concerns  We will start to roll out clinical research programs to better understand depression and anxiety in CF and treat it

21. QUESTIONS? COMMENTS?