Living with a Heart Defect: Depression and Suicide among

GUCH Patients: Never Heard of It?

EuroGUCH 2017 Lausanne, Switzerland 6 May 2017

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

• 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

Emotional functioning of adolescents & adults: Meta-analysis

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

• 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

Diagnostic interviews (outside of the Netherlands)

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

Correlates of psychological distress

• 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

Impact of depressive symptoms

Morton, An exploration into Psychology –

could you benefit? GUCH News, 2012

“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.”

Dr. Liza Morton, Psychologist Complete Congenital Heart Block, Pacemaker

Suicide

Suicide is the 17th leading global cause of death (1.4%)

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

Greatest risk: chronic illness with functional limitations

CHD: elevated risk of academic difficulties

Suicide risk in adolescents

Greydanus et al, Dev Med Child Neuro, 2010

Suicide risk in adolescents with chronic conditions

Miauton et al, Eur J Pediatr, 2003

Singhal et al, J Royal Soc Med, 2014

Risk of self-harm & suicide in specific psychiatric and physical disorders (males)

Risk of self-harm & suicide in specific psychiatric and physical disorders (females)

Singhal et al, J Royal Soc Med, 2014

Raissadati et al, J Am Coll Cardiol, 2016

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

Late causes of death after pediatric cardiac surgery

Chiu et al, Circ Cardiovasc Qual Outcomes, 2012

(falling several floors, drug intoxication, gas intoxication)

Suicide risk & GUCH: Looking closely at causes of death

General anxiety/stress 82%

Heart/health-related anxiety 71%

Depressed mood 60%

Coping with medical condition 49%

Ferguson & Kovacs, Congenit Heart Dis, 2016

Presenting psychological concerns (n = 100):

Suicidal ideation

• 1 patient reported suicidal ideation (although no intent) at the time of the assessment

• 22 patients reported past thoughts of suicide

Patients presenting to GUCH psychology service

Depression & Suicide in GUCH: What can Cardiology Providers Do?

African-American social reformer, abolitionist, writer & orator

Frederick Douglass

“It is easier to build strong children than

to repair broken men” 1855 letter

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.

Pediatric setting: Proactive approach

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.”

Adult setting: Normalize, advise and recognize

This language offers reassurance and also increases the likelihood

that patients will feel comfortable approaching providers

if/when more significant psychological concerns arise

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

Adult setting: Normalize, advise and recognize

We can reduce the stigma of seeking professional mental health support

SYMPTOMS of Major Depressive Disorder Considerations in medical settings

Depressed mood most of the day, nearly every day Is different from a transient reaction to difficult news

Anhedonia (lower interest or pleasure in activities) Is different from being unable to participate in activities due to functional limitations

Significant weight loss/gain Insomnia/hypersomnia Psychomotor agitation/retardation Fatigue of loss of energy Difficulties with concentration/decision-making

These symptoms might overlap with symptoms/side effects of the disease and treatment (eg, medications, surgeries)?

Worthlessness, excessive or inappropriate guilt

Recurrent thoughts of death (not a fear of dying) or suicide, or suicide attempt

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

Adult setting: Normalize, advise and recognize

ASK patients about specific challenges

“How are you coping with the change in your physical abilities?”

ADVISE about common challenges that might occur and how they can be managed

“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

“Would it be helpful if I met with you and your spouse together to discuss realistic expectations for household chores?”

ARRANGE referrals to mental health professions as appropriate

“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

Communication: The Four A’s

• 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.

Conclusions

Our collective responsibility/opportunity

Modified from Kaemmerer, Dtsch med Worchesnshr, 2005

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An important frontier of GUCH care:

Psychosocial well-being and quality of life

Living with a Heart Defect: Depression and Suicide among

GUCH Patients: Never Heard of It?

EuroGUCH 2017 Lausanne, Switzerland 6 May 2017

Thank you Merci Danke Grazie