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Volumn 7, Issue 1, 2013, Pages 8-13

End-of-life care in adults with congenital heart disease: Now is the time to act

Author keywords

Congenital heart disease; Palliative care; Young patient

Indexed keywords

ADULT; COMORBIDITY; CONGENITAL HEART MALFORMATION; DISEASE COURSE; HUMAN; LIFE EXPECTANCY; METHODOLOGY; MIDDLE AGED; PALLIATIVE THERAPY; PATIENT CARE; PREVALENCE; PSYCHOLOGICAL ASPECT; REVIEW; STANDARD; TRANSITION TO ADULT CARE;

EID: 84877946771     PISSN: 17514258     EISSN: 17514266     Source Type: Journal    
DOI: 10.1097/SPC.0b013e32835c0707     Document Type: Review
Times cited : (14)

References (43)
  • 1
    • 33846220206 scopus 로고    scopus 로고
    • Congenital heart disease in the general population
    • Marelli AJ, Mackie AS, Ionescu-Ittu R, et al. Congenital heart disease in the general population. Circulation 2007;115:163-172.
    • (2007) Circulation , vol.115 , pp. 163-172
    • Marelli, A.J.1    MacKie, A.S.2    Ionescu-Ittu, R.3
  • 2
    • 0001499681 scopus 로고
    • The incidence and life expectancy of children with congenital heart disease
    • Macmahon B, Mckeown T, Record RG. The incidence and life expectancy of children with congenital heart disease. Br Heart J 1953;15:121-129.
    • (1953) Br Heart J , vol.15 , pp. 121-129
    • MacMahon, B.1    McKeown, T.2    Record, R.G.3
  • 3
    • 78650174615 scopus 로고    scopus 로고
    • Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium /clinical perspective
    • Moons P, Bovijn L, Budts W, et al. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium /clinical perspective. Circulation 2010;122:2264-2272.
    • (2010) Circulation , vol.122 , pp. 2264-2272
    • Moons, P.1    Bovijn, L.2    Budts, W.3
  • 4
    • 78650172142 scopus 로고    scopus 로고
    • Mortality resulting from congenital heart disease among children and adults in the United States 1999 to 2006/clinical perspective
    • This large population-based study examines the mortality trends in CHD across the USA . It demonstrates a declining mortality in both children and adults
    • Gilboa SM, Salemi JL, Nembhard WN, et al. Mortality resulting from congenital heart disease among children and adults in the United States 1999 to 2006/clinical perspective. Circulation 2010;122:2254-2263. This large population-based study examines the mortality trends in CHD across the USA . It demonstrates a declining mortality in both children and adults.
    • (2010) Circulation , vol.122 , pp. 2254-2263
    • Gilboa, S.M.1    Salemi, J.L.2    Nembhard, W.N.3
  • 5
    • 0035316293 scopus 로고    scopus 로고
    • Task Force 1: The changing profile of congenital heart disease in adult life
    • Warnes CA, Liberthson R, Danielson J, et al. Task Force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001;37:1170-1175.
    • (2001) J Am Coll Cardiol , vol.37 , pp. 1170-1175
    • Warnes, C.A.1    Liberthson, R.2    Danielson, J.3
  • 6
    • 77950601990 scopus 로고    scopus 로고
    • Canadian cardiovascular society 2009 Consensus Conference on the management of adults with congenital heart disease: Complex congenital cardiac lesions
    • Silversides CK, Salehian O, Oechslin E, et al. Canadian Cardiovascular Society 2009 Consensus Conference on the management of adults with congenital heart disease: complex congenital cardiac lesions. Can J Cardiol 2010;26:e98-e117.
    • (2010) Can J Cardiol , vol.26
    • Silversides, C.K.1    Salehian, O.2    Oechslin, E.3
  • 7
  • 8
    • 80053023559 scopus 로고    scopus 로고
    • Geriatric congenital heart disease: Burden of disease and predictors of mortality
    • Afilalo J, Therrien J, Pilote L, Ionescu-Ittu R, et al. Geriatric congenital heart disease: burden of disease and predictors of mortality. J Am Coll Cardiol 2011;58:1509-1515.
    • (2011) J Am Coll Cardiol , vol.58 , pp. 1509-1515
    • Afilalo, J.1    Therrien, J.2    Pilote, L.3    Ionescu-Ittu, R.4
  • 10
    • 77952367604 scopus 로고    scopus 로고
    • Mortality in adult congenital heart disease
    • Verheugt CL, Uiterwaal CSPM, van der Velde ET, et al. Mortality in adult congenital heart disease. Eur Heart J 2010;31:1220-1229.
    • (2010) Eur Heart J , vol.31 , pp. 1220-1229
    • Verheugt, C.L.1    Cspm, U.2    Van Der Velde, E.T.3
  • 11
    • 41549165684 scopus 로고    scopus 로고
    • Late follow-up of patients who underwent palliation for complex congenital heart disease in childhood
    • Hoffmann A, Wyler F, Gunthard J, Gradel E. Late follow-up of patients who underwent palliation for complex congenital heart disease in childhood. Congenit Heart Dis 2008;3:155-158.
    • (2008) Congenit Heart Dis , vol.3 , pp. 155-158
    • Hoffmann, A.1    Wyler, F.2    Gunthard, J.3    Gradel, E.4
  • 12
    • 37349015579 scopus 로고    scopus 로고
    • Fontan operation after 3 decades: What we have learned
    • Gersony WM. Fontan operation after 3 decades: what we have learned. Circulation 2008;117:13-15.
    • (2008) Circulation , vol.117 , pp. 13-15
    • Gersony, W.M.1
  • 13
    • 80053298331 scopus 로고    scopus 로고
    • Impact of the evolution of the Fontan operation on early and late mortality: A single-center experience of 405 patients over 3 decades
    • This is a large single-centre study from Japan examining how their changing surgical approach has improved the outcome in patients undergoing a Fontan operation
    • Ohuchi H, Kagisaki K, Miyazaki A, et al. Impact of the evolution of the Fontan operation on early and late mortality: a single-center experience of 405 patients over 3 decades. Ann Thorac Surg 2011;92:1457-1466. This is a large single-centre study from Japan examining how their changing surgical approach has improved the outcome in patients undergoing a Fontan operation.
    • (2011) Ann Thorac Surg , vol.92 , pp. 1457-1466
    • Ohuchi, H.1    Kagisaki, K.2    Miyazaki, A.3
  • 14
    • 37349037210 scopus 로고    scopus 로고
    • Long-term survival, modes of death, and predictors of mortality in patients with Fontan surgery
    • Khairy P, Fernandes SM, Mayer JEJ, et al. Long-term survival, modes of death, and predictors of mortality in patients with Fontan surgery. Circulation 2008;117:85-92.
    • (2008) Circulation , vol.117 , pp. 85-92
    • Khairy, P.1    Fernandes, S.M.2    Mayer, J.E.J.3
  • 15
    • 33646259950 scopus 로고    scopus 로고
    • Clinical outcome of 193 extracardiac Fontan patients. The first 15 years
    • Giannico S, Hammad F, Amodeo A, et al. Clinical outcome of 193 extracardiac Fontan patients. The first 15 years. J Am Coll Cardiol 2006;47:2065-2073.
    • (2006) J Am Coll Cardiol , vol.47 , pp. 2065-2073
    • Giannico, S.1    Hammad, F.2    Amodeo, A.3
  • 16
    • 27544480369 scopus 로고    scopus 로고
    • The spectrum of adult congenital heart disease in Europe morbidity and mortality in a 5 year follow-up period
    • Engelfriet P, Boersma E, Oechslin E, et al. The spectrum of adult congenital heart disease in Europe : morbidity and mortality in a 5 year follow-up period. Eur Heart J 2005;26:2325-2333.
    • (2005) Eur Heart J , vol.26 , pp. 2325-2333
    • Engelfriet, P.1    Boersma, E.2    Oechslin, E.3
  • 17
    • 76149100601 scopus 로고    scopus 로고
    • Hypoplastic left heart syndrome
    • Stumper O. Hypoplastic left heart syndrome. Heart 2010;96:231-236.
    • (2010) Heart , vol.96 , pp. 231-236
    • Stumper, O.1
  • 18
    • 84055190992 scopus 로고    scopus 로고
    • Hypoplastic left heart syndrome. Current considerations and expectations
    • An extensive and up-to-date review of hypoplastic left heart syndrome including the most recent outcome data and the potential long-term complications these patients will encounter
    • Feinstein JA, Benson DW, Dubin AM, et al. Hypoplastic left heart syndrome. Current considerations and expectations. J Am Coll Cardiol 2012;59:S1-S42. An extensive and up-to-date review of hypoplastic left heart syndrome including the most recent outcome data and the potential long-term complications these patients will encounter.
    • (2012) J Am Coll Cardiol , vol.59
    • Feinstein, J.A.1    Benson, D.W.2    Dubin, A.M.3
  • 19
    • 36348961872 scopus 로고    scopus 로고
    • The failing Fontan: Options for surgical therapy
    • Huddleston C. The failing Fontan: options for surgical therapy. Pediatr Cardiol 2007;28:472-476.
    • (2007) Pediatr Cardiol , vol.28 , pp. 472-476
    • Huddleston, C.1
  • 20
    • 70249095610 scopus 로고    scopus 로고
    • Morbidity and mortality risk factors in adults with congenital heart disease undergoing cardiac reoperations
    • Giamberti A, Chessa M, Abella R, et al. Morbidity and mortality risk factors in adults with congenital heart disease undergoing cardiac reoperations. Ann Thorac Surg 2009;88:1284-1289.
    • (2009) Ann Thorac Surg , vol.88 , pp. 1284-1289
    • Giamberti, A.1    Chessa, M.2    Abella, R.3
  • 21
    • 84862873321 scopus 로고    scopus 로고
    • Management of the failing Fontan circulation
    • A thorough review of the medical and surgical management of the failing Fontan. They do not, however, mention the need for palliative care involvement in these patients
    • Deal BJ, Jacobs ML. Management of the failing Fontan circulation. Heart 2012;98:1098-1104. A thorough review of the medical and surgical management of the failing Fontan. They do not, however, mention the need for palliative care involvement in these patients.
    • (2012) Heart , vol.98 , pp. 1098-1104
    • Deal, B.J.1    Jacobs, M.L.2
  • 22
    • 68849098126 scopus 로고    scopus 로고
    • Heart transplantation for adults with congenital heart disease: Analysis of the United Network for Organ Sharing Database
    • Patel ND, Weiss ES, Allen JG, et al. Heart transplantation for adults with congenital heart disease: analysis of the United Network for Organ Sharing Database. Ann Thorac Surg 2009;88:814-822.
    • (2009) Ann Thorac Surg , vol.88 , pp. 814-822
    • Patel, N.D.1    Weiss, E.S.2    Allen, J.G.3
  • 23
    • 79952072672 scopus 로고    scopus 로고
    • Listing and transplanting adults with congenital heart disease/clinical perspective
    • An excellent review of the outcome in all patients (41 000) listed for cardiac transplantation across the USA specifically looking at those with CHD
    • Davies RR, Russo MJ, Yang J, et al. Listing and transplanting adults with congenital heart disease/clinical perspective. Circulation 2011;123:759- 767. An excellent review of the outcome in all patients (41 000) listed for cardiac transplantation across the USA specifically looking at those with CHD.
    • (2011) Circulation , vol.123 , pp. 759-767
    • Davies, R.R.1    Russo, M.J.2    Yang, J.3
  • 24
    • 77954743763 scopus 로고    scopus 로고
    • Cardiac transplantation in adults with congenital heart disease
    • Irving C, Parry G, O'Sullivan J, et al. Cardiac transplantation in adults with congenital heart disease. Heart 2010;96:1217-1222.
    • (2010) Heart , vol.96 , pp. 1217-1222
    • Irving, C.1    Parry, G.2    O'sullivan, J.3
  • 25
    • 76849092895 scopus 로고    scopus 로고
    • Hydraulic testing of intravascular axial flow blood pump designs with a protective cage of filaments for mechanical cavopulmonary assist
    • Kapadia JY, Pierce KC, Poupore AK Throckmorton AL. Hydraulic testing of intravascular axial flow blood pump designs with a protective cage of filaments for mechanical cavopulmonary assist. ASAIO J 2010;56. 26.
    • (2010) ASAIO J , vol.56 , pp. 26
    • Kapadia, J.Y.1    Pierce, K.C.2    Poupore, A.K.3    Throckmorton, A.L.4
  • 26
    • 79957711778 scopus 로고    scopus 로고
    • Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy
    • Swetz KM, Freeman MR, AbouEzzeddine OF, et al. Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clin Proc 2011;86:493-500.
    • (2011) Mayo Clin Proc. , vol.86 , pp. 493-500
    • Swetz, K.M.1    Freeman, M.R.2    Abouezzeddine, O.F.3
  • 27
    • 33750984098 scopus 로고    scopus 로고
    • Searching the Internet for medical information: Frequency over time and by age and gender in an outpatient population in the UK
    • Larner AJ. Searching the Internet for medical information: frequency over time and by age and gender in an outpatient population in the UK . J Telemed Telecare 2006;12:186-188.
    • (2006) J Telemed Telecare , vol.12 , pp. 186-188
    • Larner, A.J.1
  • 28
    • 0036903753 scopus 로고    scopus 로고
    • The use of the Internet as a resource for health information among patients attending a rheumatology clinic
    • Gordon M', Capell HA, Madhok R. The use of the Internet as a resource for health information among patients attending a rheumatology clinic. Rheumatology 2002;41:1402-1405.
    • (2002) Rheumatology , vol.41 , pp. 1402-1405
    • Gordon, M.'.1    Capell, H.A.2    Madhok, R.3
  • 29
    • 0029746032 scopus 로고    scopus 로고
    • Information needs of cancer patients in west Scotland cross sectional survey of patients' views
    • Catherine M, Paul S, Lorraine W, et al. Information needs of cancer patients in west Scotland : cross sectional survey of patients' views. BMJ 1996;313.
    • (1996) BMJ , vol.313
    • Catherine, M.1    Paul, S.2    Lorraine, W.3
  • 30
    • 0031003870 scopus 로고    scopus 로고
    • Communication and choice in dying from heart disease
    • McCarthy M, Hall JA, Ley M. Communication and choice in dying from heart disease. J R Soc Med 1997;90:128-131.
    • (1997) J R Soc Med , vol.90 , pp. 128-131
    • McCarthy, M.1    Hall, J.A.2    Ley, M.3
  • 31
    • 0036786318 scopus 로고    scopus 로고
    • Living with and dying from heart failure: The role of palliative care
    • Gibbs JSR, McCoy ASM, Gibbs LME, et al. Living with and dying from heart failure: the role of palliative care. Heart 2002;88:ii36-ii39.
    • (2002) Heart , vol.88
    • Gibbs, J.S.R.1    McCoy, A.S.M.2    Gibbs, L.M.E.3
  • 32
    • 53749094921 scopus 로고    scopus 로고
    • Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment
    • Wright AAZB. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-1673.
    • (2008) JAMA , vol.300 , pp. 1665-1673
    • Wright, A.A.Z.B.1
  • 33
    • 84857791673 scopus 로고    scopus 로고
    • End-of-life in adults with congenital heart disease: A call for early communication
    • The first of the two studies by the Toronto-based group looking specifically at communication in ACHD. This study focusses on the communication of end-of-life issues in a clinic setting
    • Tobler D, Greutmann M, Colman JM, et al. End-of-life in adults with congenital heart disease: a call for early communication. Int J Cardiol 2012;155:383-387. The first of the two studies by the Toronto-based group looking specifically at communication in ACHD. This study focusses on the communication of end-of-life issues in a clinic setting.
    • (2012) Int J Cardiol , vol.155 , pp. 383-387
    • Tobler, D.1    Greutmann, M.2    Colman, J.M.3
  • 34
    • 84555189365 scopus 로고    scopus 로고
    • End-of-life care in hospitalized adults with complex congenital heart disease: Care delayed, care denied
    • The second study from this group highlights the lack of discussion about EOL in ACHD patients who die in hospital
    • Tobler D, Greutmann M, Colman JM, et al. End-of-life care in hospitalized adults with complex congenital heart disease: care delayed, care denied. Palliat Med 2012;26:72-79. The second study from this group highlights the lack of discussion about EOL in ACHD patients who die in hospital.
    • (2012) Palliat Med , vol.26 , pp. 72-79
    • Tobler, D.1    Greutmann, M.2    Colman, J.M.3
  • 36
    • 27644520050 scopus 로고    scopus 로고
    • Factors that enable or complicate end-of-life transitions in critical care
    • Badger JM. Factors that enable or complicate end-of-life transitions in critical care. Am J Crit Care 2005;14:513-521.
    • (2005) Am J Crit Care , vol.14 , pp. 513-521
    • Badger, J.M.1
  • 38
    • 78650332494 scopus 로고    scopus 로고
    • Patient preferences for the delivery of bad news: The experience of a UK Cancer Centre
    • Brown VA, Parker PA, Furber RL, Thomas AL. Patient preferences for the delivery of bad news: the experience of a UK Cancer Centre. Eur J Cancer Care 2011;20:56-61.
    • (2011) Eur J Cancer Care , vol.20 , pp. 56-61
    • Brown, V.A.1    Parker, P.A.2    Furber, R.L.3    Thomas, A.L.4
  • 39
    • 79951915884 scopus 로고    scopus 로고
    • Role of palliative care in adolescent and young adult oncology
    • This review of the specific palliative care needs of young people is largely based on the author's extensive experience and is illustrated with case histories
    • Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol 2010;28:4819-4824. This review of the specific palliative care needs of young people is largely based on the author's extensive experience and is illustrated with case histories.
    • (2010) J Clin Oncol , vol.28 , pp. 4819-4824
    • Wein, S.1    Pery, S.2    Zer, A.3
  • 40
    • 77953308368 scopus 로고    scopus 로고
    • Medical end-of-life decisions in children in Flanders , Belgium a population-based postmortem survey
    • Pousset G. Medical end-of-life decisions in children in Flanders , Belgium : a population-based postmortem survey. Arch Pediatr Adolesc Med 2010;164:547-553.
    • (2010) Arch Pediatr Adolesc Med , vol.164 , pp. 547-553
    • Pousset, G.1
  • 41
    • 79951882028 scopus 로고    scopus 로고
    • Transition of care for young adult survivors of childhood and adolescent cancer: Rationale and approaches
    • Freyer DR. Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol 2010. 28.4810-4818.
    • (2010) J Clin Oncol , vol.28 , pp. 4810-4818
    • Freyer, D.R.1
  • 42
    • 68449090621 scopus 로고    scopus 로고
    • An integrated model of provision of palliative care to patients with cystic fibrosis
    • Bourke SJ, Doe SJ, Gascoigne AD, et al. An integrated model of provision of palliative care to patients with cystic fibrosis. Palliat Med 2009;23:512-517.
    • (2009) Palliat Med , vol.23 , pp. 512-517
    • Bourke, S.J.1    Doe, S.J.2    Gascoigne, A.D.3
  • 43
    • 79958271457 scopus 로고    scopus 로고
    • End of life care in CF: Patients, families and staff experiences and unmet needs
    • This study examines the role of palliative care in a nonmalignant disease and uses focus group interviews. Whilst this looks at cystic fibrosis patients, there are many parallels that can be drawn for CHD.
    • Braithwaite M, Philip J, Tranberg H, et al. End of life care in CF: patients, families and staff experiences and unmet needs. J Cyst Fibros 2011;10:253-257. This study examines the role of palliative care in a nonmalignant disease and uses focus group interviews. Whilst this looks at cystic fibrosis patients, there are many parallels that can be drawn for CHD.
    • (2011) J Cyst Fibros , vol.10 , pp. 253-257
    • Braithwaite, M.1    Philip, J.2    Tranberg, H.3


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