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The Role of the Psychologist in Adult Congenital Heart Disease

      Due to diagnostic, surgical, interventional, and pharmacologic advances, it is estimated that up to 95% of infants born with congenital heart defects will reach adulthood [
      • Warnes C.A.
      The adult with congenital heart disease: born to be bad?.
      ]. There are now more adults than children living with congenital heart disease [
      • Webb G.
      Improving the care of Canadian adults with congenital heart disease.
      ], but there exists a less than ideal capacity to manage adults in pediatric or adult cardiology clinics. Adult congenital heart disease (ACHD) patients are at an increased risk of late cardiac complications including arrhythmias, endocarditis, congestive heart failure, and pulmonary vascular disease. The effects of chronic illness, multiple surgical admissions, and hospitalization in childhood, adolescence, and adulthood can have a significant impact on the psychological well-being of these patients. The evidence for psychological distress in impacting health outcomes and quality of life (QOL) across cardiac patient populations is now considered by some as “clear and convincing” [
      • Rozanski A.
      • Blumenthal J.A.
      • Kaplan J.
      Impact of psychological factors on the pathogenesis of cardiovascular disease and implications for therapy.
      ]. Psychological distress is common following cardiac diagnosis, with approximately 20% to 50% of patients reporting adjustment difficulties [
      • Carney R.M.
      • Freedland K.E.
      • Sheline Y.I.
      • et al.
      Depression and coronary heart disease: a review for cardiologists.
      ]. Therefore, in addition to monitoring and treating the medical sequelae, it is important to recognize and manage the potential psychosocial consequences of growing up with congenital heart disease [
      • Kovacs A.H.
      • Sears S.F.
      • Saidi A.
      Biopsychosocial experiences of adults with congenital heart disease: review of the literature.
      ,
      • Moons P.
      • De Geest S.
      • Budts W.
      Comprehensive care for adults with congenital heart disease: expanding roles for nurses.
      ]. International working groups have emphasized the inclusion of specialized mental health care for ACHD [

      Care of the Adult with Congenital Heart Disease. Presented at the 32nd Bethesda Conference. Bethesda, Maryland, October 2–3, 2000. J Am Coll Cardiol 2001;37:1161–98.

      ,
      • Connelly M.S.
      • Webb G.D.
      • Somerville J.
      • et al.
      Canadian Consensus Conference on Adult Congenital Heart Disease 1996.
      ,
      • The Task Force on the Management of Grown Up Congenital Heart Disease, European Society of Cardiology, ESC Committee for Practice Guidelines
      Management of grown up congenital heart disease.
      ]. The summary document of the 32nd Bethesda Conference (“Care of the Adult with Congenital Heart Disease”) included the following statement: “The emotional health of adults with [congenital heart disease] should be a priority in the overall care of this patient population” [

      Care of the Adult with Congenital Heart Disease. Presented at the 32nd Bethesda Conference. Bethesda, Maryland, October 2–3, 2000. J Am Coll Cardiol 2001;37:1161–98.

      ]. Similarly, the Task Force on the Management of Grown Up Congenital Heart Disease of the European Society of Cardiology stated, “The specialist service for grown-ups with congenital heart disease must provide support for the many psychosocial problems in this population” [
      • The Task Force on the Management of Grown Up Congenital Heart Disease, European Society of Cardiology, ESC Committee for Practice Guidelines
      Management of grown up congenital heart disease.
      ].
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      References

        • Warnes C.A.
        The adult with congenital heart disease: born to be bad?.
        J Am Coll Cardiol. 2005; 46: 1-8
        • Webb G.
        Improving the care of Canadian adults with congenital heart disease.
        Can J Cardiol. 2005; 21: 833-838
        • Rozanski A.
        • Blumenthal J.A.
        • Kaplan J.
        Impact of psychological factors on the pathogenesis of cardiovascular disease and implications for therapy.
        Circulation. 1999; 99: 2192-2217
        • Carney R.M.
        • Freedland K.E.
        • Sheline Y.I.
        • et al.
        Depression and coronary heart disease: a review for cardiologists.
        Clin Cardiol. 1997; 20: 196-200
        • Kovacs A.H.
        • Sears S.F.
        • Saidi A.
        Biopsychosocial experiences of adults with congenital heart disease: review of the literature.
        Am Heart J. 2005; 150: 193-201
        • Moons P.
        • De Geest S.
        • Budts W.
        Comprehensive care for adults with congenital heart disease: expanding roles for nurses.
        Eur J Cardiovasc Nurs. 2002; 1: 23-28
      1. Care of the Adult with Congenital Heart Disease. Presented at the 32nd Bethesda Conference. Bethesda, Maryland, October 2–3, 2000. J Am Coll Cardiol 2001;37:1161–98.

        • Connelly M.S.
        • Webb G.D.
        • Somerville J.
        • et al.
        Canadian Consensus Conference on Adult Congenital Heart Disease 1996.
        Can J Cardiol. 1998; 14: 395-452
        • The Task Force on the Management of Grown Up Congenital Heart Disease, European Society of Cardiology, ESC Committee for Practice Guidelines
        Management of grown up congenital heart disease.
        Eur Heart J. 2003; 24: 1035-1084
        • Brandhagen D.J.
        • Feldt R.H.
        • Williams D.E.
        Long-term psychological implications of congenital heart disease: a 25-year follow-up.
        Mayo Clin Proc. 1991; 66: 474-479
        • Horner T.
        • Liberthson R.
        • Jellinek M.S.
        Psychosocial profile of adults with complex congenital heart disease.
        Mayo Clin Proc. 2000; 75: 31-36
        • Popelova J.
        • Slavik Z.
        • Skovranek J.
        Are cyanosed adults with congenital cardiac malformations depressed?.
        Cardiol Young. 2001; 11: 379-384
        • Bromberg J.I.
        • Beasley P.J.
        • D'Angelo E.J.
        • et al.
        Depression and anxiety in adults with congenital heart disease: a pilot study.
        Heart Lung. 2003; 32: 105-110
        • Utens E.M.
        • Verhulst F.C.
        • Erdman R.A.
        • et al.
        Psychosocial functioning of young adults after surgical correction for congenital heart disease in childhood: a follow up study.
        J Psychosom Res. 1994; 38: 745-758
        • Utens E.M.
        • Bieman H.J.
        • Verhulst F.C.
        • et al.
        Psychopathology in young adults with congenital heart disease: follow up results.
        Eur Heart J. 1998; 19: 647-651
        • Van Rijen E.H.
        • Utens E.M.
        • Roos-Hesselink J.W.
        • et al.
        Psychosocial functioning of the adult with congenital heart disease: a 20–33 years follow up.
        Eur Heart J. 2003; 24: 673-683
        • Cox D.
        • Lewis G.
        • Stuart G.
        • et al.
        A cross-sectional study of the prevalence of psychopathology in adults with congenital heart disease.
        J Psychosom Res. 2002; 52: 65-68
        • van Rijen E.H.
        • Utens E.M.
        • Roos-Hesselink J.W.
        • et al.
        Medical predictors for psychopathology in adults with operated congenital heart disease.
        Eur Heart J. 2004; 25: 1605-1613
        • van Rijen E.H.
        • Utens E.M.
        • Roos-Hesselink J.W.
        • et al.
        Longitudinal development of psychopathology in an adult congenital disease cohort.
        Int J Cardiol. 2005; 99: 315-323
        • Engel G.L.
        The need for a new medical model: a challenge for biomedicine.
        Science. 1977; 196: 129-136
        • Moons P.
        • Marquet K.
        • Budts W.
        • et al.
        Validity, reliability and responsiveness of the “Schedule for the Evaluation of Individual Quality of Life-Direct Weighting” (SEIQoL-DW) in congenital heart disease.
        Health Qual Life Outcomes. 2004; 2: 27
        • Moons P.
        • Van Deyk K.
        • Marquet K.
        • et al.
        Individual quality of life in adults with congenital heart disease: a paradigm shift.
        Eur Heart J. 2005; 26: 298-307
        • Kamphuis M.
        • Ottenkamp J.
        • Vliegen H.W.
        • et al.
        Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease.
        Heart. 2002; 87: 356-362
        • Lane D.A.
        • Lip G.Y.
        • Millane T.A.
        Quality of life in adults with congenital heart disease.
        Heart. 2002; 88: 71-75
        • Simko L.C.
        • McGinnis K.A.
        Quality of life experienced by adults with congenital heart disease.
        AACN Clin Issues. 2003; 14: 42-53
        • Rose M.
        • Kohler K.
        • Kohler F.
        • et al.
        Determinants of the quality of life of patients with congenital heart disease.
        Qual Life Res. 2005; 14: 35-43
        • Gersony W.M.
        • Hayes C.J.
        • Driscoll D.J.
        • et al.
        Second natural history study of congenital heart defects. Quality of life of patients with aortic stenosis, pulmonary stenosis, or ventricular septal defect.
        Circulation. 1993; 87: I52-I65
        • Saliba Z.
        • Butera G.
        • Bonnet D.
        • et al.
        Quality of life and perceived health status in surviving adults with univentricular heart.
        Heart. 2001; 86: 69-73
        • Immer F.F.
        • Althaus S.M.
        • Berdat P.A.
        • et al.
        Quality of life and specific problems after cardiac surgery in adolescents and adults with congenital heart diseases.
        Eur J Cardiovasc Prev Rehabil. 2005; 12: 138-143
        • Fekkes M.
        • Kamphuis R.P.
        • Ottenkamp J.
        • et al.
        Health-related quality of life in young adults with minor congenital heart disease.
        Psychol Health. 2001; 16: 239-250
        • Rietveld S.
        • Mulder B.J.
        • van Beest I.
        • et al.
        Negative thoughts in adults with congenital heart disease.
        Int J Cardiol. 2002; 86: 19-26
        • Simko L.C.
        • McGinnis K.A.
        What is the perceived quality of life of adults with congenital heart disease and does it differ by anomaly?.
        J Cardiovasc Nurs. 2005; 20: 206-214
        • Ternestedt B.M.
        • Wall K.
        • Oddsson H.
        • et al.
        Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect.
        Pediatr Cardiol. 2001; 22: 128-132
        • Moons P.
        • Van Deyk K.
        • De Geest S.
        • et al.
        Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients?.
        Heart. 2005; 91: 1193-1198
        • McMurray R.
        • Kendall L.
        • Parson J.M.
        • et al.
        A life less ordinary: growing up and coping with congenital heart disease.
        Coron Health Care. 2001; 5: 51-57
        • Kokkonen J.
        • Paavilainen T.
        Social adaptation of young adults with congenital heart disease.
        Int J Cardiol. 1992; 36: 23-29
        • Tong E.M.
        • Sparacino P.S.
        • Messias D.K.
        • et al.
        Growing up with congenital heart disease: the dilemmas of adolescents and young adults.
        Cardiol Young. 1998; 8: 303-309
        • Claessens P.
        • Moons P.
        • de Casterle B.D.
        • et al.
        What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients.
        Eur J Cardiovasc Nurs. 2005; 4: 3-10
        • Kamphuis M.
        • Vogels T.
        • Ottenkamp J.
        • et al.
        Employment in adults with congenital heart disease.
        Arch Pediatr Adolesc Med. 2002; 156: 1143-1148
        • Somerville J.
        The woman with congenital heart disease.
        Eur Heart J. 1998; 19: 1766-1775
        • Williams R.G.
        • Pearson G.D.
        • Barst R.J.
        • et al.
        Report of the National Heart, Lung, and Blood Institute working group on research in adult congenital heart disease.
        J Am Coll Cardiol. 2006; 47: 701-707
        • Yusuf S.
        • Hawken S.
        • Ounpuu S.
        • et al.
        • on behalf of the INTERHEART Study Investigators
        Effect of potentially modifiable risk factors associated with myocardial infarction in 52 countries (the INTERHEART Study): case-control study.
        Lancet. 2004; 364: 937-952
        • Rozanski A.
        • Blumenthal J.A.
        • Davidson K.W.
        • et al.
        The epidemiology, pathophysiology, and management of psychosocial risk factors in cardiac practice: the emerging field of behavioral cardiology.
        J Am Coll Cardiol. 2005; 45: 637-651
        • Zellweger M.J.
        • Osterwalder R.H.
        • Langewitz W.
        • et al.
        Coronary artery disease and depression.
        Eur Heart J. 2004; 25: 3-9
        • van Melle J.P.
        • de Jonge P.
        • Spijkerman T.A.
        • et al.
        Prognostic association of depression following myocardial infarction with mortality and cardiovascular events: a meta-analysis.
        Psychosom Med. 2004; 66: 814-822
        • Eifert G.H.
        • Zvolensky M.J.
        • Lejuez C.W.
        Heart-focused anxiety and chest pain: a conceptual and clinical review.
        Clin Psychol Sci Prac. 2000; 7: 403-417
        • Pauli P.
        • Wiedemann G.
        • Dengler W.
        • et al.
        Anxiety in patients with an automatic implantable cardioverter defibrillator: what differentiates them from panic patients?.
        Psychosom Med. 1999; 61: 69-76
        • Rietveld S.
        • Karsdorp P.A.
        • Mulder B.J.
        Heartbeat sensitivity in adults with congenital heart disease.
        Int J Behav Med. 2004; 11: 203-211
        • Price B.
        Illness careers: the chronic illness experience.
        J Adv Nurs. 1996; 24: 275-279
        • Mueller P.S.
        • Hook C.C.
        • Hayes D.L.
        Ethical analysis of withdrawal of pacemaker or implantable cardioverter-defibrillator support at the end of life.
        Mayo Clin Proc. 2003; 78: 959-963
        • Quill T.E.
        • Barold S.S.
        • Sussman B.L.
        Discontinuing an implantable cardioverter defibrillator as a life-sustaining treatment.
        Am J Cardiol. 1994; 74: 205-207
        • Kiecolt-Glaser J.K.
        • Page G.G.
        • Marucha P.T.
        • et al.
        Psychological influences on surgical recovery: perspectives from psychoneuroimmunology.
        Am Psychol. 1998; 53: 1209-1218
        • Devine E.C.
        Effects of psychoeducational care for adult surgical patients: a meta-analysis of 191 studies.
        Patient Educ Couns. 1992; 19: 129-142
        • Johnston M.
        • Vogele C.
        Benefits of psychological preparation for surgery: a meta-analysis.
        Ann Beh Med. 1993; 15: 245-256
        • Seskevich J.E.
        • Crater S.W.
        • Lane J.D.
        • et al.
        Beneficial effects of noetic therapies on mood before percutaneous intervention for unstable coronary syndromes.
        Nurs Res. 2004; 53: 116-121
        • Gatzoulis K.
        • Frogoudaki A.
        • Brili S.
        • et al.
        Implantable defibrillators: from the adult cardiac to the grown up congenital heart disease patient.
        Int J Cardiol. 2004; 97: 117-122
        • Herbst J.H.
        • Goodman M.
        • Feldstein S.
        • et al.
        Health related quality of life assessment of patients with life-threatening ventricular arrhythmias.
        Pacing Clin Electrophysiol. 1999; 22: 915-926
        • Schron E.B.
        • Exner D.V.
        • Yao O.
        • et al.
        Quality of life in the antiarrhythmics versus implantable defibrillators trial: impact of therapy and influence of adverse symptoms and defibrillator shocks.
        Circulation. 2002; 105: 589-594
        • Sears S.F.
        • Conti J.B.
        Quality of life and psychological functioning of ICD patients.
        Heart. 2002; 87: 488-493
        • Irvine J.
        • Dorian P.
        • Baker B.
        • et al.
        Quality of life in the Canadian Implantable Defibrillator Study (CIDS).
        Am Heart J. 2002; 144: 282-289
        • Sears S.F.
        • Todaro J.F.
        • Lewis T.S.
        • et al.
        Examining the psychosocial impact of implantable cardioverter defibrillators: a literature review.
        Clin Cardiol. 1999; 22: 481-489
        • Sears S.F.
        • Kovacs A.H.
        • Azzarello L.
        • et al.
        Innovations in health psychology: the psychosocial care of adults with implantable cardioverter defibrillators.
        Prof Psychol Res Pract. 2004; 35: 520-526
        • Reid G.J.
        • Irvine M.J.
        • McCrindle B.W.
        • et al.
        Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects.
        Pediatrics. 2004; 113: e197-e205
        • Dusseldorp E.
        • van Elderen T.
        • Maes S.
        • et al.
        A meta-analysis of psychoeducational programs for coronary heart disease patients.
        Health Psychol. 1999; 18: 506-519
        • Reybrouck T.
        • Mertens L.
        Physical performance and physical activity in grown-up congenital heart disease.
        Eur J Cardiovasc Prev Rehabil. 2005; 12: 498-502
        • Kulkarni S.P.
        • Alexander K.P.
        • Lytle B.
        • et al.
        Long-term adherence with cardiovascular drug regimens.
        Am Heart J. 2006; 151: 185-191
        • DiMatteo M.R.
        • Lepper H.S.
        • Croghan T.W.
        Depression is a risk factor for noncompliance with medical treatment. Meta-analysis of the effects of anxiety and depression on patient adherence.
        Arch Intern Med. 2000; 160: 2102-2107
        • Ziegelstein R.C.
        • Fauerbach J.A.
        • Stevens S.S.
        • et al.
        Patients with depression are less likely to follow recommendations to reduce cardiac risk during recovery from a myocardial infarction.
        Arch Intern Med. 2000; 160: 1818-1823
        • Morgan A.L.
        • Masoudi F.A.
        • Havranek E.P.
        • et al.
        Difficulty taking medications, depression, and health status in heart failure patients.
        J Card Fail. 2006; 12: 54-60
        • Daliento L.
        • Mapelli D.
        • Volpe B.
        Measurement of cognitive outcome and quality of life in congenital heart disease.
        Heart. 2006; 92: 569-574
        • Bass J.L.
        • Corwin M.
        • Gozal D.
        • et al.
        The effect of chronic or intermittent hypoxia on cognition in childhood: a review of the evidence.
        Pediatrics. 2004; 114: 805-816
        • Wray J.
        • Sensky T.
        Congenital heart disease and cardiac surgery in childhood: effects on cognitive function and academic ability.
        Heart. 2001; 85: 687-691
        • Daliento L.
        • Mapelli D.
        • Russo G.
        • et al.
        Health related quality of life in adults with repaired tetralogy of Fallot: psychosocial and cognitive outcomes.
        Heart. 2005; 91: 213-218
        • Griffin K.J.
        • Elkin T.D.
        • Smith C.J.
        Academic outcomes in children with congenital heart disease.
        Clin Pediatr. 2003; 42: 401-409
        • Kamphuis M.
        • Zwinderman K.H.
        • Vogels T.
        • et al.
        A cardiac-specific health related quality of life module for young adults with congenital heart disease: development and validation.
        Qual Life Res. 2004; 13: 735-745
        • Lip G.Y.
        • Lane D.A.
        • Millane T.A.
        • et al.
        Psychological interventions for depression in adolescent and adult congenital heart disease.
        Cochrane Database Syst Rev. 2003; 3 (CD004394)
        • Bassett A.S.
        • Chow E.W.
        • Husted J.
        • et al.
        Clinical features of 78 adults with 22ql Deletion Syndrome.
        Am J Med Genet. 2005; 138A: 307-313
        • Street R.L.
        • Gordon H.S.
        • Ward M.M.
        • et al.
        Patient participation in medical consultations: why some patients are more involved than others.
        Med Care. 2005; 43: 960-969
        • Salzer M.U.
        Highlights of the meeting of the Psychosocial Working Group of the Association for European Paediatric Cardiology.
        Cardiol Young. 2005; 15: 111-113