EuroGUCH 2017 Lausanne, Switzerland 6 May 2017 Living with a Heart Defect: Depression and Suicide among GUCH Patients: Never Heard of It? Adrienne H. Kovacs, PhD Director, Behavioral Cardiovascular Program Knight Cardiovascular Institute, Oregon Health & Science University
Disclosures & opening thoughts No financial conflicts of interest After working as a psychologist with GUCH patients for over 12 years, this is the first time I ve ever been invited to speak on the important topic of suicide A few words on my own experiences talking to patients and families about suicide
Depression & Psychological Distress in GUCH
Emotional functioning of adolescents & adults: Meta-analysis Self-reported psychological symptoms (ie, depression and/or anxiety) PedsQL Emotional Functioning Scale, Hospital Anxiety & Depression Scale, SF-36 Mental Health Status, State-Trait Anxiety Index, Youth Self-Report Compared patients with congenital heart disease to control group or measure norms 22 studies published 1980-2013 Jackson et al, Congenit Heart Dis, 2015
13 studies: no differences 6 studies: patients had greater emotional distress Pooled effect size = -0.11, though significant heterogeneity across studies
Diagnostic interviews (outside of the Netherlands) Clinical interviews suggest that 28 35% meet diagnostic criteria for a mood or anxiety disorder Prevalence of mood disorders is approximately triple that observed in the general population 0-31% of patients with psychiatric disorders receive mental health treatment Horner et al, Mayo Clin Proc, 2000; Bromberg et al, Heart Lung, 2003; Kovacs et al, Int J Cardiol, 2009; Westhoff-Bleck et al, J Affect Disord, 2016
Correlates of psychological distress MORE LIKELY Social difficulties (social anxiety, loneliness, lower social support) Problem-solving abilities Financial strain Poorer school performance Illness perceptions Use of alcohol/tobacco Perceived health status LESS LIKELY (OR INCONSISTENT) Disease severity Functional status Kovacs et al, Int J Cardiol, 2009 Bang et al, Int J Cardiol, 2013 Enomoto et al, Circ J, 2013 Eslami et al, J Psychosom Res, 2013 Callus et al, Card Young, 2013 Freitas et al, BMJ Open, 2013 Muller et al, Int J Cardiol, 2013 O Donovan et al, Cardiol Young, 2015 Khan et al, Congenit Heart Dis, 2015
Impact of depressive symptoms In multivariable analysis, depression is a significant risk factor for high resource use hospitalization among GUCH patients undergoing surgery in pediatric hospitals Patients with elevated Beck Depression Inventory (BDI) scores have reduced event-free survival (death or cardiac hospitalization) Males treated with antidepressant medication have lower survival than males not receiving treatment or females receiving/not receiving treatment Kim et al, Circ Cardiovasc Qual Outcomes, 2011 Kourkoveli et al, Congenit Heart Dis, 2015 Diller et al, Eur Heart J, 2015
Dr. Liza Morton, Psychologist Complete Congenital Heart Block, Pacemaker It is important to note that seeking support does not mean that we are mad, crazy, or weak. It just means that we are human, that we feel a normal emotional response to unusually difficult life events, and that this can be overwhelming. We don t hesitate to seek advice when we experience physical symptoms so it s only sensible to seek help when we feel overwhelmed by emotional discomfort. Morton, An exploration into Psychology could you benefit? GUCH News, 2012
Suicide
Suicide is the 17 th leading global cause of death (1.4%)
Suicide risk in adolescents Around the world: 100,000 to 200,000 young adults (aged 15 24 years) commit suicide each year Greydanus et al, Dev Med Child Neuro, 2010
Suicide risk in adolescents 5-10% of adolescents with major depressive disorder will complete suicide within 15 years of diagnosis CHD: elevated risk of academic difficulties Greatest risk: chronic illness with functional limitations Greydanus et al, Dev Med Child Neuro, 2010
Suicide risk in adolescents with chronic conditions Miauton et al, Eur J Pediatr, 2003
Risk of self-harm & suicide in specific psychiatric and physical disorders (males) Singhal et al, J Royal Soc Med, 2014
Risk of self-harm & suicide in specific psychiatric and physical disorders (females) Singhal et al, J Royal Soc Med, 2014
Late causes of death after pediatric cardiac surgery Suicide rate determined to be similar between study population and general population Of 879 patients with late mortality and operated on between 1953 1989, 37 (4%) died by suicide Raissadati et al, J Am Coll Cardiol, 2016
Suicide risk & GUCH: Looking closely at causes of death (falling several floors, drug intoxication, gas intoxication) Chiu et al, Circ Cardiovasc Qual Outcomes, 2012
Patients presenting to GUCH psychology service Presenting psychological concerns (n = 100): General anxiety/stress 82% Heart/health-related anxiety 71% Depressed mood 60% Coping with medical condition 49% Suicidal ideation 1 patient reported suicidal ideation (although no intent) at the time of the assessment 22 patients reported past thoughts of suicide Ferguson & Kovacs, Congenit Heart Dis, 2016
Depression & Suicide in GUCH: What can Cardiology Providers Do?
Frederick Douglass It is easier to build strong children than to repair broken men 1855 letter African-American social reformer, abolitionist, writer & orator
Pediatric setting: Proactive approach Because social and psychological functioning are related: Actively encourage full participation in social activities Provide opportunities for CHD peer interaction Because your voices carry weight with patients and families: Ask: Is there anything that you/your child avoids because of CHD? Foster self-management skills Encourage OPTIMISM Because you can t do it all yourselves: Coordinate comprehensive care: physical therapy, occupational therapy, speech therapy, social work, psychology, etc.
Adult setting: Normalize, advise and recognize NORMALIZE Many of our patients will struggle with low mood or anxiety at some point in their lives. We understand that living with CHD doesn t only affect your heart. It can affect you and your loved ones in a lot of different ways. Even patients who are strong, independent and resilient sometimes struggle with low mood. This language offers reassurance and also increases the likelihood that patients will feel comfortable approaching providers if/when more significant psychological concerns arise
Adult setting: Normalize, advise and recognize ADVISE (share what has worked with other patients) Physical activity Asking questions (to avoid misinformation) Assertive communication Connecting with other patients Speaking with mental health professionals We can reduce the stigma of seeking professional mental health support
Adult setting: Normalize, advise and recognize SYMPTOMS of Major Depressive Disorder Depressed mood most of the day, nearly every day Anhedonia (lower interest or pleasure in activities) Significant weight loss/gain Insomnia/hypersomnia Psychomotor agitation/retardation Fatigue of loss of energy Difficulties with concentration/decision-making Worthlessness, excessive or inappropriate guilt Recurrent thoughts of death (not a fear of dying) or suicide, or suicide attempt Considerations in medical settings Is different from a transient reaction to difficult news Is different from being unable to participate in activities due to functional limitations These symptoms might overlap with symptoms/side effects of the disease and treatment (eg, medications, surgeries)? Symptoms cause clinically significant distress/impairment in important areas of functioning (eg, social, occupational) and are not due to physiological effects of a substance or medical condition
Communication: The Four A s ASK patients about specific challenges ADVISE about common challenges that might occur and how they can be managed How are you coping with the change in your physical abilities? Some patients have said that they find it difficult when they don t have energy to do the things they used to do. Learning how to pace themselves seems to really help. ASSIST the patient through education and brief problem-solving ARRANGE referrals to mental health professions as appropriate Would it be helpful if I met with you and your spouse together to discuss realistic expectations for household chores? It seems like this decline in your health has really impacted your mood. That s common. Shall we refer you to a psychologist? Kovacs, Sears & Saidi, Cardiol Clin, 2006
Conclusions As a group, GUCH patients in most countries are at elevated risk of significant psychological distress. Chronic illness is a risk factor for suicide, though data on suicide and congenital heart disease are only now emerging. Health promotion strategies should target both physical and psychosocial well-being. We have a collective responsibility and opportunity that goes beyond saving lives. We can help patients live as rich and fulfilling lives as possible.
% Survival to Adulthood Our collective responsibility/opportunity An important frontier of GUCH care: Psychosocial well-being and quality of life Modified from Kaemmerer, Dtsch med Worchesnshr, 2005
EuroGUCH 2017 Lausanne, Switzerland 6 May 2017 Living with a Heart Defect: Depression and Suicide among GUCH Patients: Never Heard of It? Thank you Merci Danke Grazie