PFF DISEASE EDUCATION WEBINAR SERIES. Welcome!
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1 PFF DISEASE EDUCATION WEBINAR SERIES Welcome!
2 PFF DISEASE EDUCATION WEBINAR SERIES Presentation: Coping with Pulmonary Fibrosis: What About My Mental Health? Deborah A. Gillman PhD University of Pittsburgh Medical Center Q+A
3 DEBORAH A. GILLMAN, PHD 2006: PhD Clinical Psychology City University of New York 2010: UPMC Pulmonary Division to provide behavioral health services to patients, caregivers Simmons Center for Interstitial Lung Disease Asthma Institute Transplant, Pre and Post Support Groups, live, call in
4 GOALS OF TODAY S WEBINAR What is the relationship between pulmonary disease and mental health, specifically IPF? Kinds of coping (there are many) and how to get to the good kind. How do I know if I need to talk with someone other family or friend? How to obtain services? What kind?
5 IPF AND MENTAL HEALTH WHAT DOES THE RESEARCH SAY? 2013 UK: Screened for depression in 118 IPF patients. Just under 50% scored as depressed 9 patients were being treated with medication More common in women No difference with age, severity of illness, time since diagnosis Chronic Respiratory Disease Netherlands: Quality of life in 41 IPF patients. 25% patients scored as depressed Associated with breathlessness European Respiratory Journal 2001
6 IPF AND MENTAL HEALTH WHAT DOES THE RESEARCH SAY? Depression is up to 7 times more likely in people with chronic illness than in the general population Depression found in 15-20% of cancer patients Approximately 7% general population in a given year receive diagnosis of depression Anxiety and panic are more common in people with respiratory health problems as high as 38% in some pulmonary disorders vs. 18% adults in general in a given year American Psychological Association
7 IPF AND MENTAL HEALTH WHAT DOES THE RESEARCH SAY? 2014: Respiratory health journal editorial: Depression and anxiety require particular attention in interstitial lung diseases such as IPF because of how frequently they occur with shortness of breath Repeated screening over time for depression and anxiety in IPF Symptom management of depression and anxiety to maintain and/or improve functioning in IPF Respirology 2014
8 ANXIETY: THE BODY S FEAR RESPONSE SYSTEM Why do anxiety and breathing disorders go together? The same area of the brain controls both physical symptoms of anxiety and breathing ALSO Shortness of breath causes feelings of fear, conditions a person to feel anxious
9 IPF AND MENTAL HEALTH WHAT DOES THE RESEARCH SAY? BUT: Don t need a formal mental health diagnosis to justify difficulty coping with IPF! 2013 Study using in-depth interviews with 18 IPF patients found struggles with: Cough, shortness of breath, sleep Frustrations with limits on functioning Anger at loss of independence Impact on relationships Caregiver struggles as well Palliative Medicine 2013
10 COPING WITH IPF Before we discuss the stress of living with IPF: HOW DO WE EXPERIENCE STRESS?
11 THREE-PART MODEL: HOW WE EXPERIENCE STRESS
12 THOUGHTS, FEELINGS, BEHAVIOR What you think affects how you feel. How you feel affects what you can/will do. What you do or don t do affects your thoughts, feelings.
13 COPING Different sources of stress or distress? Different points to intervene! Goal of care is often to improve ACTIVE COPING through thinking, doing and feeling.
14 WHAT AM I THINKING? CAN I CHANGE MY THINKING? Wearing oxygen is too embarrassing My friends can meet up without me. My friends care about me and who cares what strangers think? If I can t run/bike/mow/swim like I used to than I won t do it at all. My doctor says exercise is important. I know it is, even a little can help. My sex life is over. People (healthier people) have varied sex lives!
15 WHAT AM I THINKING? CAN I CHANGE MY THINKING? People will see my oxygen and think I was a smoker. People are thinking of themselves and who cares? I should drop out of the church choir. Singing even a little, makes me feel alive! Only crazy people see counselors! A consultation may help Heck, it s 2015! Asking for help means I am weak. Who in this world never needs help? You may get some!
16 WHAT AM I THINKING? CAN I CHANGE MY THINKING? I m not a support group kind of person. A lot is changing maybe this needs to change too? Other people in group may be pre-transplant and I am not. Or, I am listed for transplant, others may not be. IPF Support group members may understand me more than most people in my life, at this time. Research studies are not for me, I would feel like a guinea pig. This is something I CAN do.
17 WHAT AM I DOING OR NOT DOING? IS IT ACTIVE COPING? Isolating, turning down invitations Losing chance for contact, distraction, fun Sleeping Avoid overdoing it vs. oversleeping Not sleeping, instead worrying Realistic vs. excessive worry? Doctors appointments, many of them Ensure these are not only outings! Filling out papers or not filling them out Paperwork burden is real. Can you budget time, set aside?
18 COPING INTERVENTION 2010 Pittsburgh: Six-week intervention to reduce symptom burden and improve health-related quality of life in IPF patients, a program for patients and caregivers Patients felt less isolated Gained perspective on disease Lower stress in caregivers Valued participating in research Heart Lung 2010
19 THOUGHTS ON DOING TRY IT! YOU MAY LIKE IT (ENOUGH) We often decide to WAIT until we feel better to DO the thing we know we should do. But sometimes DOING first brings us closer to FEELING how we would like to feel.
20 WHAT AM I DOING OR NOT DOING? What about EXERCISE and PULMONARY REHAB? ü Great active coping ü Practice doing in order to feel better ü Reduce isolation ü Instant support group ü Keep heart and muscles conditioned **Studies show improved health-related quality of life in IPF patients attending pulmonary rehab
21 MORE THOUGHTS ON DOING At a loss for what to do? Remember the 5 senses:
22 AND HERE IS ONE MORE THOUGHT ON DOING What am I already doing that helps a little? The small things matter!
23 FEELINGS (FINALLY) Feelings and thoughts are not the same. (This is not as obvious as it sounds.) What can I do if I am overwhelmed by feelings? By stress?
24 FEELINGS AND COPING How can I FEEL better? Remember, changes in thinking and doing can impact how you feel Talking with family, friends Support groups, webinars (nice work today!) Spiritual advisors, clergy Professional support Ø How do I know if/when this is needed?
25 SEEKING TREATMENT Threshold for seeking counseling varies: How overwhelmed? For how long? Sad or despairing and cannot function? Worry that disrupts functioning beyond health changes? Feedback from loved ones, providers? Support at home, among friends, or in community? Reduce burden on care partners by talking to a professional? Need for confidential setting.
26 SEEKING TREATMENT (CONT.) Treatment may: Address concrete goals or be open ended, exploring May concern illness or not; illness as touchstone. No right way to feel May be time limited, may be ongoing May lead to medication referral, may not
27 MENTAL HEALTH VS. BEHAVIORAL HEALTH Is there a difference? Technically no, but Mental Health Treatment of mental illness Treatment, Intervention Stigma of old term Root causes Behavioral Health Promotes well being Prevention, not Intervention Hopefulness, change behavioral (not mental state) Surface factors Psychology Today, October 2009
28 SEEKING TREATMENT Do I need a counselor who specializes in IPF or lung disease (Psychologist, Social Worker)? Ø Not necessarily. How do I find a therapist? Ø Hospital, insurer, community, Ø What about medication for my mood or anxiety. Who decides? Who prescribes? Ø Pulmonologist. PCP. Palliative. Psychiatry.
29 THANK YOU! I look forward to answering your questions.
30 Q+A
31 Q+A Any coping skill tips to keep my spirits up and to respond to non-helpful comments from others such as - "slow down, you need to rest more " Do you just not discuss IPF with loved ones who get so stressed that you become their caregiver? Being a newly diagnosed patient how does one inform family members what IPF is doing to me, and how it will effect their lives in the future? I've lost interest in activities that I used to love: golf, for example. I know that I am mildly depressed and am taking medication (Celexa, 10 mg). I also sleep a lot since I went on O2. Is this all a normal mental progression for IPF?
32 Q+A Sometimes I have good days and some bad days w/ depression. On my bad days, I just don t want to do anything and am tired. When should I talk to my doctor about maybe getting on meds or should I just see a therapist? How can I deal with feelings of being less efficient mentally than in previous years? What part does exercise play in mental health in coping with this disease? Please provide advice for those of us who have comorbidities that are disabling and very painful.
33 Q+A How can I cope with the anxiety of the unknown about if and when I will be eligible for lung transplant or by the time my IPF progresses to the point of immediate need for lung transplant I might be considered too old for eligibility? Which tool / measure do you use to establish clinically significant anxiety / depression in patients with IPF? How do you make a business case to justify early referral to psychological services? Specialist vs generalist psychology
34 NEXT UP IN THE PFF DISEASE EDUCATION WEBINAR SERIES Lung Transplantation Wednesday, January 14 th 12:00 p.m. to 1:00 p.m. CST Presented by: Sangeeta Bhorade, MD Medical Director, Lung Transplant Program Northwestern University David J. Lederer, MD PFF Senior Medical Advisor, Patient Communications Associate Medical Director of the NY Presbyterian Lung Transplant Program Visit the PFF website to register and submit your questions. The presenters are building their talk around your questions!
35 Thank you! Sponsored with the generous support of
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