Joint Annual Meeting of the Swiss Society of Cardiology and the Swiss Society for Cardio and Thoracic Vascular Surgery Palazzo dei Congressi Lugano: 14 June 2013 Cognitive Function and Congenital Heart Disease Anxiety and Depression in Adults with Congenital Heart Disease Adrienne H. Kovacs, PhD, CPsych Toronto Congenital Cardiac Centre for Adults Peter Munk Cardiac Centre, University Health Network Faculty of Medicine, University of Toronto, Canada
The Plan A lifespan approach to the psychosocial challenges of congenital heart disease (CHD) Anxiety and depression among adults with CHD Psychosocial intervention for adults with CHD
Psychosocial Challenges of Congenital Heart Disease: A Lifespan Approach
An Illness Career Individuals with a chronic illness develop an illness career that responds to changes in health, his or her involvement with health care professionals, and the psychological changes associated with pathology, grief and stress Child Adolescent Adult Price, J Adv Nursing, 1996
Pediatric Psychosocial Outcomes Meta-analysis of 11 studies (patients 2-19 yrs) that used the Child Behavior Checklist (CBCL) Younger children (< 6 yrs): Patients had less internalizing and externalizing behaviors than control group Older children and adolescents (> 10 yrs): Patients had more internalizing and externalizing behaviors Disease severity and year in which study was conducted were both unrelated to problem behaviors Karsdorp et al, J Ped Psychol, 2007
Pediatric Psychosocial Outcomes Systematic review of 23 studies According to parents Rates of psychological maladjustment (CBCL) higher in patients than control groups and related to severity of CHD and developmental disorder According to patients Self-report: Good psychological adjustment Diagnostic interview: Elevated rates of psychiatric disorders Latal et al, BMC Pediatrics, 2009
Among pediatric patients with complex CHD, there is a distinctive pattern of neurodevelopmental and behavioral impairment characterized by mild cognitive impairment, impaired social interaction, and impairments in core communication skills, including pragmatic language, as well as inattention, impulsive behavior, and impaired executive functioning. These problems do not disappear when children become adolescents or adults. Marino et al, Circulation, 2012
Adult Implications: Case Example 25-year old male with tetralogy of Fallot Repeated first grade: underwent psychological evaluation at that time, but neither he nor his parents were informed of results Second evaluation in Grade 7 or 8 to prepare for high school : does not recall learning results High school English grade: 40% After high school, enrolled in college but was withdrawn after failing several classes Diagnosed with learning disability after submitting writing sample
Adult Implications: Case Example 25-year old male with tetralogy of Fallot Began taking classes at a different college Failed his English class several times Underwent intelligence & achievement testing Performance IQ: 30 th percentile Verbal IQ: 6 th percentile Reading abilities: Grade 4-6 His goal: 4 year advertising program Presenting problem: anxiety re. academic performance Therefore, pediatric-onset neuro-developmental problems impact adult psychosocial functioning
What are the unique medical and psychosocial implications of growing up with congenital heart disease?
CHD vs. Coronary Artery Disease
CHD vs. Coronary Artery Disease
Anxiety and Depression in Adults with CHD
Anxiety & Depression in Adult CHD Canada & US 28% - 35% meet diagnostic criteria for psychiatric diagnosis Prevalence of mood disorders is 3 times that observed in the general population 0 31% of adults with CHD 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
72 ACHD pts & 86 controls (aged 18-39 years) Results: Adults with CHD had lower scores on measures of independence, problemsolving, and self-esteem and higher score on measure of dependence on parents Problem-solving had most direct influence on mental health-esteem Enomoto et al, Circ J, 2013
347 ACHD pts & 353 controls (aged 18-64 years) Results: Adults with CHD had higher scores for anxiety and somatic symptoms; there was no difference in depressive symptoms Among adults with CHD, perceived financial strain and lower perceived social support were related with anxiety and depression Eslami et al, J Psychosom Res, 2013
Anxiety & Depression in Adult CHD Australia A third of patients were above the cut-off score for probable depression or anxiety. Wang et al, PCCS, Cairns, 2009
Anxiety & Depression in Adult CHD Netherlands Psychological functioning of adults with CHD is similar to national norms Adults with CHD report less hostility and neuroticism and higher self-esteem Utens et al, 1994, 1995, 1998, 2005; van Rijen et al, Eur Heart J, 2003
Predicting Depression Symptoms N = 280 Mean age = 32 90% moderate/complex CHD Toronto & Gainesville Hierarchical regression (in 3 blocks) to predict Beck Depression Inventory-II scores Entered Into Model Age Sex Site (Gainesville/Toronto) Education Defect Complexity Functional status Perceived physical health Fear of negative evaluation Loneliness Kovacs et al, Int J Cardiol, 2009
Predicting Depression Symptoms N = 280 Mean age = 32 90% moderate/complex CHD Toronto & Gainesville Hierarchical regression (in 3 blocks) to predict Beck Depression Inventory-II scores Significant Age Sex Site (Gainesville/Toronto) Education Defect Complexity Functional status Perceived physical health Fear of negative evaluation Loneliness
Predicting Anxiety Symptoms Hierarchical regression (in 3 blocks) to predict State-Trait Anxiety Inventory scores Entered Into Model Age Sex Site (Gainesville/Toronto) Education Defect Complexity Functional status Perceived physical health Fear of negative evaluation Loneliness
Predicting Anxiety Symptoms Hierarchical regression (in 3 blocks) to predict State-Trait Anxiety Inventory scores Significant Age Sex Site (Gainesville/Toronto) Education Defect Complexity Functional status Perceived physical health Fear of negative evaluation Loneliness
Social Challenges of CHD Many patients recall isolation, embarrassment, teasing, or bullying during childhood/adolescence Body image concerns are not uncommon Fewer young adults with CHD are sexually active than their healthy peers Higher rates of unemployment Horner et al, Mayo Clin Proc, 2000; McMurray et al, Coronary Health Care, 2001; Reid et al, Int J Cardiol, 2008; Kamphuis et al, Arch Pediatr Adolesc Med, 2002; Crossland et al, Cardiol in the Young, 2005
Feeling different Themes from qualitative research: The dilemma of normality Challenges and attempts at balance: Social integration vs. social isolation Being different vs. not being different Revealing CHD vs. not revealing disease Tong et al, Cardiol Young, 1998; Claessens et al, Eur J Cardiovasc Nurs, 2005; Berghammer et al, Int J Cardiol, 2006
Parental Over-Protection N = 159 Mean age = 32 yrs 89% had moderate/complex CHD Dependent variable: Heart-Focused Anxiety (Cardiac Anxiety Questionnaire) Ong et al, Int J Beh Med, 2010
Psychosocial Intervention in ACHD
Intervention? There are currently NO published psychosocial interventions for adolescents or adults with CHD Potential focus of intervention: Parental behaviors Social skills training Physical activity Resilience/coping skills/problem-solving training Lip et al, Cochrane Database Syst Rev, 2003
Interest in Mental Health Treatment 51% of patients reported high interest in at least one topic N = 155 0 = not at all interested 10 = extremely interested Kovacs et al, Int J Cardiol, 2009
Treatment Preferences Three focus groups with 14 adults with CHD (aged 19 67) What type of psychosocial services do patients want? How do they want to access psychosocial services? Why do they want them? Page et al, Psychol Health, 2012
WHAT Psychological Services Patients Want COUNSELING CONNECTING WITH OTHER PATIENTS PSYCHO-EDUCATION
WHY Patients Want Psychological Services INTERPERSONAL CHALLENGES Social isolation Conflicting social expectations Difficulties talking about illness Feeling different INTRAPERSONAL CHALLENGES Body image concerns Living with chronic illness Tolerating uncertainty Seeking reassurance & hope Desire to give back Maximizing potential
Adult CHD Psychological Services Models for collaboration: Full integration within GUCH team Identification of external providers to whom to refer interested patients Considerations: Size of program Finances Availability of external providers
Retrospective Study (n = 100) Inclusion criteria: 18 years or older Documented CHD Participation in a psychological assessment at the Toronto Congenital Cardiac Centre for Adults One of 100 most recent patients to undergo psychological assessment Ferguson & Kovacs, WCPCCS, 2013
Background
Psychological Assessment: Primary Presenting Concern
Psychological Assessment: Any Presenting Concern
Psychological Assessment: Any Presenting Concern
Psychological Assessment 23% had a history of suicidal ideation 65% met DSM-IV diagnostic criteria for a psychiatric disorder Generalized Anxiety Disorder: 24% Major Depressive Disorder: 23%
Outcomes of 100 Psych Assessments Treatment not needed: 4 Therapy offered: 87 Referred to other service: 9 Patient declined: 12 Patient accepted: 75 Treatment completed: 36 Treatment ongoing: 20 Noncompletion: 19 No psych distress: 21 Reduced psych distress: 15 Non-attendance (14) Moved (2) Death (1) Legal troubles (1) Psychiatry referral (1) Mean of 12 psychotherapy sessions
Focus of Psychotherapy
Conclusions The professional obligation to patients goes beyond saving and extending lives. As a group, adults with CHD are at increased risk of mood and anxiety disorders and interested in psychological services. Reduced psychological distress can be achieved with a specialized psychological service. GUCH programs are encouraged to provide psychosocial care to their patients
Joint Annual Meeting of the Swiss Society of Cardiology and the Swiss Society for Heart and Thoracic Vascular Surgery Palazzo dei Congressi Lugano: 14 June 2013 Cognitive Function and Congenital Heart Disease Anxiety and Depression in Adults with Congenital Heart Disease Thank you Merci Danke Grazie