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Marelli AJ, Mackie AS, Ionescu-Ittu R, et al. Congenital heart disease in the general population. Circulation 2007;115:163-172.
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Marelli, A.J.1
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Mortality resulting from congenital heart disease among children and adults in the United States 1999 to 2006/clinical perspective
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This large population-based study examines the mortality trends in CHD across the USA . It demonstrates a declining mortality in both children and adults
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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.
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Gilboa, S.M.1
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Danielson, J.3
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Canadian cardiovascular society 2009 Consensus Conference on the management of adults with congenital heart disease: Complex congenital cardiac lesions
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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.
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Can J Cardiol
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Silversides, C.K.1
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Geriatric congenital heart disease: Burden of disease and predictors of mortality
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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.
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J Am Coll Cardiol
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Mortality in adult congenital heart disease
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Verheugt CL, Uiterwaal CSPM, van der Velde ET, et al. Mortality in adult congenital heart disease. Eur Heart J 2010;31:1220-1229.
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Late follow-up of patients who underwent palliation for complex congenital heart disease in childhood
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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.
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Hoffmann, A.1
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Fontan operation after 3 decades: What we have learned
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Gersony WM. Fontan operation after 3 decades: what we have learned. Circulation 2008;117:13-15.
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Circulation
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Gersony, W.M.1
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13
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80053298331
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Impact of the evolution of the Fontan operation on early and late mortality: A single-center experience of 405 patients over 3 decades
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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
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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.
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Ann Thorac Surg
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Ohuchi, H.1
Kagisaki, K.2
Miyazaki, A.3
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14
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Long-term survival, modes of death, and predictors of mortality in patients with Fontan surgery
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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.
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Khairy, P.1
Fernandes, S.M.2
Mayer, J.E.J.3
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15
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33646259950
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Clinical outcome of 193 extracardiac Fontan patients. The first 15 years
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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.
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J Am Coll Cardiol
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Giannico, S.1
Hammad, F.2
Amodeo, A.3
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16
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The spectrum of adult congenital heart disease in Europe morbidity and mortality in a 5 year follow-up period
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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.
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Eur Heart J
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Engelfriet, P.1
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Hypoplastic left heart syndrome
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Stumper O. Hypoplastic left heart syndrome. Heart 2010;96:231-236.
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Heart
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Stumper, O.1
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18
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Hypoplastic left heart syndrome. Current considerations and expectations
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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
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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.
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J Am Coll Cardiol
, vol.59
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Feinstein, J.A.1
Benson, D.W.2
Dubin, A.M.3
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19
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36348961872
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The failing Fontan: Options for surgical therapy
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Huddleston C. The failing Fontan: options for surgical therapy. Pediatr Cardiol 2007;28:472-476.
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Pediatr Cardiol
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Huddleston, C.1
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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.
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Giamberti, A.1
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21
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84862873321
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Management of the failing Fontan circulation
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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
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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.
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Heart
, vol.98
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Deal, B.J.1
Jacobs, M.L.2
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22
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68849098126
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Heart transplantation for adults with congenital heart disease: Analysis of the United Network for Organ Sharing Database
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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.
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Ann Thorac Surg
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Patel, N.D.1
Weiss, E.S.2
Allen, J.G.3
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23
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79952072672
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Listing and transplanting adults with congenital heart disease/clinical perspective
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An excellent review of the outcome in all patients (41 000) listed for cardiac transplantation across the USA specifically looking at those with CHD
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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.
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Circulation
, vol.123
, pp. 759-767
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Davies, R.R.1
Russo, M.J.2
Yang, J.3
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24
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77954743763
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Cardiac transplantation in adults with congenital heart disease
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Irving C, Parry G, O'Sullivan J, et al. Cardiac transplantation in adults with congenital heart disease. Heart 2010;96:1217-1222.
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Heart
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Irving, C.1
Parry, G.2
O'sullivan, J.3
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25
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76849092895
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Hydraulic testing of intravascular axial flow blood pump designs with a protective cage of filaments for mechanical cavopulmonary assist
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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.
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ASAIO J
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Kapadia, J.Y.1
Pierce, K.C.2
Poupore, A.K.3
Throckmorton, A.L.4
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26
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79957711778
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Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy
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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.
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Mayo Clin Proc.
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Swetz, K.M.1
Freeman, M.R.2
Abouezzeddine, O.F.3
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27
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33750984098
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Searching the Internet for medical information: Frequency over time and by age and gender in an outpatient population in the UK
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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.
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J Telemed Telecare
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Larner, A.J.1
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28
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0036903753
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The use of the Internet as a resource for health information among patients attending a rheumatology clinic
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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.
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Rheumatology
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Gordon, M.'.1
Capell, H.A.2
Madhok, R.3
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29
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Information needs of cancer patients in west Scotland cross sectional survey of patients' views
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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.
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BMJ
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Catherine, M.1
Paul, S.2
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Communication and choice in dying from heart disease
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McCarthy M, Hall JA, Ley M. Communication and choice in dying from heart disease. J R Soc Med 1997;90:128-131.
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J R Soc Med
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McCarthy, M.1
Hall, J.A.2
Ley, M.3
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31
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Living with and dying from heart failure: The role of palliative care
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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.
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Heart
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Gibbs, J.S.R.1
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53749094921
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Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment
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Wright AAZB. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-1673.
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JAMA
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Wright, A.A.Z.B.1
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33
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84857791673
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End-of-life in adults with congenital heart disease: A call for early communication
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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
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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.
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Int J Cardiol
, vol.155
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Tobler, D.1
Greutmann, M.2
Colman, J.M.3
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34
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84555189365
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End-of-life care in hospitalized adults with complex congenital heart disease: Care delayed, care denied
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The second study from this group highlights the lack of discussion about EOL in ACHD patients who die in hospital
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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.
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Palliat Med
, vol.26
, pp. 72-79
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Tobler, D.1
Greutmann, M.2
Colman, J.M.3
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36
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27644520050
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Factors that enable or complicate end-of-life transitions in critical care
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Badger JM. Factors that enable or complicate end-of-life transitions in critical care. Am J Crit Care 2005;14:513-521.
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Am J Crit Care
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Badger, J.M.1
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38
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78650332494
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Patient preferences for the delivery of bad news: The experience of a UK Cancer Centre
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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.
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(2011)
Eur J Cancer Care
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Brown, V.A.1
Parker, P.A.2
Furber, R.L.3
Thomas, A.L.4
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39
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79951915884
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Role of palliative care in adolescent and young adult oncology
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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
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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.
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(2010)
J Clin Oncol
, vol.28
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Wein, S.1
Pery, S.2
Zer, A.3
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40
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77953308368
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Medical end-of-life decisions in children in Flanders , Belgium a population-based postmortem survey
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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.
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Arch Pediatr Adolesc Med
, vol.164
, pp. 547-553
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Pousset, G.1
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41
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79951882028
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Transition of care for young adult survivors of childhood and adolescent cancer: Rationale and approaches
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Freyer DR. Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol 2010. 28.4810-4818.
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(2010)
J Clin Oncol
, vol.28
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Freyer, D.R.1
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42
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68449090621
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An integrated model of provision of palliative care to patients with cystic fibrosis
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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.
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(2009)
Palliat Med
, vol.23
, pp. 512-517
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Bourke, S.J.1
Doe, S.J.2
Gascoigne, A.D.3
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43
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79958271457
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End of life care in CF: Patients, families and staff experiences and unmet needs
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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.
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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.
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(2011)
J Cyst Fibros
, vol.10
, pp. 253-257
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Braithwaite, M.1
Philip, J.2
Tranberg, H.3
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