The Aristotle Score for Congenital
Heart Surgery
Francois Lacour-Gayet, David Clarke, J iffrey Jacobs, William Gaynor)
Leslie Hamilton, MarshallJacobs, Bohdan Maruszewski, NIarco Pozzi,
Thomas SJ]raJl, Christo Tchervenkov, Constantine Mavroudis,
and the Aristotle Committee
The aim of the Aristotle project was to develop a new method of evaluation of quality of care in
congenital heart surgery based on the complexity of the surgical procedures. Involving a panel of
expert surgeons, the project started in 1999 and included 50 pediatric surgeons from 23 countries
representing International Scientific Societies. The complexity was based on the procedures as
defined by the Society of Thoracic Surgeons (STSJ/European Association for Cadiothoracic Surgery
(EACTSJ International Nomenclature and was undertaken in two steps: The first step was establishing the Basic Score, which adjusts only the complexity of the procedures and is based on three
factors: the potentia.1 for mortality, the potential for morbidity, and the anticipated technical
difficulty. The second step was the development of the Comprehensive Score, which further adjusts
the complexity according to the specific patient characteristics .The Aristotle score allows precise
scoring of the complexity for 145 congenital heart surgery procedures. One interesting concept
coming out of this study is that complexity is a constant and precise value for a given patient
regardless of the center where he is operated. The Aristotle method allows proposing the following
equation of quality of care: Complexity FN Outcome = Performance. The Aristotle score, electron·
ically available, was introduced In the EACTS and STS databases. A validation process, designed to
evaluate its predictive value, is being developed.
@ 2004 Elsevier Inc. A/1 rights reserved.
Key words: Cangential heart surgery, outcomes, complexity, performance.
HE EVALUATION of quality of care is
becoming a duty of the surgical practice,
particularly in pediatric cardiac surgery. Initially
considered a research issue, this responsibility is
rapidly increasing, driven by demand from hospital managers, referring physicians, families, insurance companies, government agencies, courts,
and the media.
Evaluation of quality of care is a new chapter
of modern medicine that follows a different rhet-
T
From 1/11; Chi/drBII', Hospito.l, DelIV'r, CO,- Ail Chi/dr.n's Uni·
versi!), Hllipilal, St Petersburg, FL; Chi/drM's Hospital ofPili/od.l·
pllia, PA; F,uUla'l Hllij,ilal, N.wcasll., UK; Sl Ouislopher's Hospilal fir Children, Philalkll,!lia, PA; Memorial HlJSpital, WarJa,",
Poland; Alder Hay OtiM"n's Hospital, Liv.rpool, UK; MOlllreal
Children's IloJpila~ MOlllrlUl~ Callada; eMUrell'.r Memorial Ho.rpi.
lal, Oticago, II..
AildreJs T</Jri'll r.qlll!Slslo FranaJi.r LaCrJur-Ga;~I, MD, Ti14 Childr.n'slfllipilal, 1056 EIISI 1911, Ave, D''''jlJr, CO 80218.
© 2001 ElJevier Inc. Ail rigllts TeSoroed.
1092·9126/01/0701-0025$30.00/0
dod 0.1053/j.jlCSu.2004. 02. 011
oric and the need to compare and measure. Many
instruments used in the past to describe our results are obsolete. New methods, parameters, and
vocabulmy are needed.
Methods
The comparison and measurement of quality of
care needs four tools:
1. A coml"flon language used in the population
studied: nomenclature. I•2
2. A database with a simple data set: registry.3.4
3. A parameter to allow comparison: cOlllplexi!y.5,6
4. A data validation process.
Following several years of collaborative work
among congenital heart surgeons,6 represcnting
International Scientific Societies (Society of
Thoracic Surgeons [STSJ, European Association
for Cardiothoracic Surgcry [EACTS], European Congenital Heart Surgeon's Foundation
[ECHSF) , Congential Heart Sw-geon's Society
P.dialric Cardiac Surgery Annual oflh. So,nillars ill Thoracic and CaTdiovascular Surgery, Vol 7, 2004: pp 185-/91
185
186
Lacour-Gqyet et at
comploxlly
2$..,-----------n. t------------
,...
-l--~~~-~~~~-~~
~NOIWOOd
:
'L.1-----------::;;ifI?::.
AllO
uf--_,..,.<:n--------LO .I------~------
145 Pfocullu're.
Figure 1. The Aristotle scale ranges from 1.5 to
25. The basic score (1.5 to 15) reflects only
procedure complexity. The comprehensive
score (1.5 to 25) includes complexity factors
related to the specific patient. ASD, atrial septal
defeat; VSD, ventricular septal defeat; ASO,
aterial switch operation.
[CHSSJ), a new parameter, "complexity," is proposed, with the following new equation for quality of care:
Complexity FN Outcome = Performance
(Constant]
(Variable)
(Variable)
Outcomes and performance can vary, according to surgeons or centcrs. On the contrary, the
complexity of a procedure is a constallt feature for
a given patient and whatever his global location.
Complexity was quantified (Fig I), based on a
consensus of international expert surgeons representing 50 centcrs and 23 countries. It is based
on procedures and not on diagnoses because different procedures may be applied to the same
diagnosis. Complexity of a pmcedure includes a
basic value, modified by procedure-dependelit
and -independent factors. Each complexity factor
was scored according to potential for operative
mortality, morbidity, and surgical technique difficulty (Table I). Mortality and morbidity were
based on results published in the literature. Difficulty of surgical technique, however, is a new
factor that was evaluated according to the perception of the group of experts. We have named
this complexity stratification the "Aristotle
score," following Aristotle's belief in the importance of current opinion: "When there is no scientific answer available, the opinion (Doxa) perceived and admitted by the majority has value of
truth," (Aristotle, Rhetoric, Book I, 350 BC).
Several areas of surgical (or medical) performance can be studied, according to the outcome
to be evaluated:
Operative performance: complexity FN hospital
survival
Perioperative performance: complexity FN morbidity
Rehabilitation: complexity FN long-term survival
Satisfaction: complexity FN patient evaluation
Financial performance: complexity FN cost
Preliminary Results
The development of the Aristotle score took 4
years to complete, from 1999 through Scptember
2003. It was finally achieved by the Aristotle Executive Committee, who met more than 20 times
in conjunction with various international meetings. The basic score (Appendix I) is a procedureadjusted complexity and only applies to procedures. It can be used retrospectively to entcr
complexity into almost any database software.
The comprehellsive score (available on Internet in
summer 2004) is much more precise and introduces patient-adjusted complexity, studying the
combined procedures, the variation of the anatomy, and the clinical status of each patient. The
respective scale of the basic and comprellensive
Table 1. Parameters Used for CompleXity ScorIng
Complexlty Score
1 pt
2 pt
3 pt
4 pt
5 pt
Mortality
<1%
1-5%
5-10%
10-20%
>20%
Morbidity leU Stay
ICU
ICU
ICU
ICU
ICU
0-24 H
1D-30
40-70
1W-2W
>2W
Surgical Difficulty
elementary
simple
average
Important
major
NOTE. Complexity is the sum of: potential for mortality (discharge or 30 days mortality), the potential for morbidity (leU
length of stay), and the anticipated surgicallechnique difficully. Scoring was based on a grade from 1 to 5 in each calegory
(see Appendix 1).
187
Arwtolle Score fir COllgenital Heart Surgery
Complexity
1.5
Figure 2. Hospital survival versus complexity.
Data from 26 centers reporting to the EACTS congenital database. Three
bubble sizes Indicate the
volume of procedures reported by centers Oarge,
medium, small}. Only centers having the same complexity level can be compared together.
1-\-------,
6.7 ± 0.4
6.5+------,
6 . ·---------'=+------'''W''---iH
5.5
5-!----,--..l..-----r---....-----''----,----,-----,
88.0%
90.0%
92.0%
.25D
score is shown in Fig 1. The scoring used for
calculation of complexity is given in Table 1.
The first evaluation deals with a preliminary
study of the variation in performance of European centers. Twenty-six EACTS Centers were
studied during the period of 1999 to 2003, involving a total of 13,508 patients and 14,493 procedures. Centers with less than 200 procedures
performed during the time period were excluded.
The avel-age number of procedures per center
was 519 (range, 206 to 2,457). According to the
volume harvested, there were: two large centers
(> 1,000 procedures), 10 medium centers (500 to
1,000 procedures), and 14 smaller centers «500
procedures). The average hospital mortality
within 30 days was 4.8% (range, 1.9 to 9.6), corresponding to a hospital survival of 95.2% :!:
2.02% (range, 90.'1·% to 98.1%). The average complexity, according to the Basic SCDl-e was 6.7 :!:
0.4 (range, 5.7 to 7.2).
The centers were compared plotting complexity against hospital survival, as shown in Fig 2. In
addition, thrcc different sized bubbles indicate
the volume of pmcedures harvested by centers.
The average values of complexity and survival
allow defining four quadrants: (1) In the upper
right quadrant are centers with high complexity
and low mortality. (2) In the right lower quadrant
are centers with low mortality but with less complex pmcedures; these centers might select their
patients. (3) In the upper left quadrant are centers with high complexity but a higher mortality.
These centers should be carefully evaluated; they
can only be compared with centers of the same
level of complexity. (,~) The left lower quadrant
94.0%
96.0%
98.0%
100.0%
9~2±2%
Hospital SurvIval
contains centers with lower complexity and
higher mortality. The survival level representing
two standard deviation below the mean is indicated.
Discussion
The preliminary results shown on Fig 2 are based
data from the EACTS congenital database. 6
These data are not authenticated and do not
represent the same time period of harvesting at
each center. Therefore, this graph shows only
preliminary results; final conclusions on the effect of a center's size on outcomes will be drawn
later with verified and validated data.
The validation process of the scientific society
databases remains a controversial issue. Nevertheless, it is needed and is anticipated by the
health care payers. The mechanism of such a
process is not established yet and is still under
investigation at the STS and EACTS.
The original contribution of the Aristotle
project is to define complexity as a constant and
global value for a given patient and to define
performance as a combination of complexity and outcome. Based on this concept, we have proposed
that performance equals complexity times outcollle.6 At
this stage of development, we believe that the
hypothesized equation provides a fair definition
of performance.
This new method of evaluation of quality of care
requires further validation. The next task of the
Aristotle Committee will be to evaluate the predictive value of the Aristotle Score for mortality and
morbidity and compare the respective value of the
all
188
Lacour- Gqyel et
basic score and the comprehensive score. The validation process is under way and should be completed in 2004 for the basic score and in 2005 fot'
the comprehensive score, respectively.
Conclusion
The Aristotle project is now complete. Two scores
are available: the basic score, a procedure-adjusted complexity score, and the comprehensive
score, a patient-acljusted complexity score. Preliminat)' results comparing complexity with survival allow establishing a new I1]ode of categorization of the CI-IS centers that we believe is more
precise and fair. Allowing accurate evaluation of
surgical performance in CHS, the Aristotle score
is also a powerful vector of communication with
patients, surgeons, cardiologists, and health care
payers. Evaluating the predictive value of the
Aristotle method is in progress to confirm the
validity of the method.
at
References
I. Mavroudis C,JacobsJP,Jacobs ML, et al: Congenital heart
surgery nomenclature and data base project: Introduction
and overview. Ann Thorae Surg 69:SI-S372, 2000
2. Lacour-Gayet F, Maruszewski B, Mavroudis C, et aI: Presentation of the International Nomenclature for Congeni tal Heart Surgery. The long way from nomenclature to
collection of validated data at the EACTS. Eur J Cardiothorae Surg 18:128-135,2000
3. Williams WG, McCrindle BW: Practical experience with
databases for congenital heart disease: A registry versus an
academic database. Semin Thorae Cardiovasc Surg Pediatr
Card Surg Annu 5:132-14-2,2000
4. lo.-laruszewski B, Lacour-Gayet F, Elliott ~U, et al: Congenital Heart Surgery Nomenclature and Database Project:
Update and proposed data harvest. Eur J Cardiothorae
Surg 21:47-49, 2002
5. Lacour-Gayet F: Risk stratification theme for congenital
heart surgery. Semin That'ac Carruovase Surg Pediatr
Card Surg Annu 5:148-152,2002
6. Lacour.Gayet F, Clatke 0, Jacobs J, et al: The Aristotle
Score: A complexity-adjusted method to evaluate surgical
results. Presented at the 17 th Annual Meeting of the
EACTS in Vienna. EurJ Cardiothorac Surg 2004 (in press)
Appendix 1. Aristotle Basic Complexity Score
Complexity
Level
1.5 to 5.9
6.0 to 7.9
8.0 to 9.9
10.0 to 15.0
1
2
3
4
N
Procedures
135
141
143
144
145
138
1
2
3
6
76
106
114
115
121
4
5
97
116
117
Pleural drainage procedure
Bronchoscopy
Delayed sternal closure
Mediastinal exploration
Sternotomy wound drainage
Intra-aortic balloon pump OABP) insertion
PFO, primary closure
ASD repair, primary closure
AS D repair, patch
ASD partial closure
Pericardial drainage procedure
PDA closure, surgical
Pacemaker implantation, permanent
Pacemaker procedure
Shunt, ligation, and takedown
ASD, common atrium (single atrium), septation
ASD creation/enlargement
Coronary artery fistula ligation
iCD (AICD) implantation
ICD (AICD) (automatic implantable cardioverter
defibrillator) procedure
Ligation, thoracic duct
Diaphragm plication
Atrial septal fenestration
136
142
7
Basic
Score
Levels
Mortality
Morbidity
DiffiCUlty
1.5
1.5
1.5
1.5
1.5
2,0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.5
3.8
4.0
4.0
4.0
4.0
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
1
0.5
0.5
0.5
0.5
0.5
0.5
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.5
1.0
1.0
1.0
1.5
1.5
0.5
0.5
0.5
0.5
0.5
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
2.0
2.0
1.0
1.0
0.5
0.5
0.5
0.5
0.5
0.5
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.0
1.8
1.0
1.0
1.5
1.5
4.0
4.0
5.0
1
1
1
1.0
1.0
2.0
2.0
2.0
2.0
1.0
1.0
1.0
189
A,is(otle ScoreJor Congenital Heart Surgery
Appendix 1. Aristotle Basic Complextty Score (Cont'd)
N
Procedures
21
111
133
137
113
50
8
9
15
16
20
45
77
PAPVG repair
Lung biopsy
Ugation, pUlmonary artery
Decortication
Pectus repair
Valvuloplasty, pulmonic
VSD repair, primary closure
VSO repair, patch
AVC (AVSD) repair, partial (Incomplete) (PAVSD)
AP window repair
Valve replacement, truncal valve
PA, reconstructron (plasty), main (trunk)
Pericardiectomy
Coarctation repair, end to end
Coarctation repair, subclavian flap
Coarctation repair, patch aortoplasty
Vascular ring repair
PA banding (PAB)
PA debanding
EGMO procedure
Aortic stenosis, subvalvar, repair
Shunt, systemic to pulmonary, modified BlalockTaussig shunt (MBTS)
AVC (AVSD) repair, Intermediate (transitionaQ
RVOT procedure
Valve replacement, pulmonic (PVR)
Gor triatriatum repair
Shunt, systemic to pUlmonary, central (from aorta
or to main pulmonary artery)
Bidirectional cavopulmonary anastomosis (BDCPA)
(bidirectional Glenn)
ValvUloplasty, truncal valve
Anomalous systemic venous connection repair
Occlusion MAPGA(s)
ValvUloplasty, tricuspid
Valve exciSion, tricuspid (without replacement)
DGRV repair
Valve replacement, aortic (AVR), mechanical
Valve replacement, aortic (AVR), bioprosthetic
Aortic arch repair
Glenn (unidirectional cavopulmonary anastomosis)
(unidirectional Glenn)
Right/left heart assist device procedure
Ventricular septal fenestration
TOF repair, ventriculotomy, non-transanular patch
Valve replacement, tricuspid (TVR)
Conduit placement, RV to PA
Aortic stenosis, supravalvar, repair
Sinus of Valsalva, aneurysm repair
Valve replacement, mitral (MVR)
Coronary artery bypass
Bilateral bidirectional cavopulmonary anastomosis
(BBDCPA) (bilateral bidirectional Glenn)
Atrial baffle procedure (non-Mustard, non-Senning)
PA, reconstruction (plasty), branch, central (within
the hilar bifurcation)
PA, reconstruction (plasty), branch, peripheral (at
or beyond the hilar bifurcation)
99
101
102
107
122
123
139
64
119
14
43
51
24
120
125
19
27
38
39
42
48
55
56
104
126
140
12
30
40
52
65
66
70
98
127
26
46
47
Basic
Score
Levels Mortality Morbidity Difficulty
5.0
5.0
5.0
5.0
5.3
5.6
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.0
6.3
6.3
1
1
1
1
1
1
2
2
2
2
2
2
2
2
2
2
2
2
2
2
2
2
2.0
1.5
1.5
1.0
2.0
1.8
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
1.0
2.0
2.0
1.0
1.0
1.8
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
3.0
1.8
2.0
2.0
1.5
1.5
3.0
2.3
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2,0
2.0
2.0
2.0
2.0
2.0
2.0
1.0
2.5
2.3
6.5
6.5
6,5
6.8
6.8
2
2
2
2
2
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.5
2.5
2.5
2.8
2.8
6.8
2
2.3
2.0
2.5
7.0
7.0
7.0
7.0
7.0
7:0
7.0
7.0
7.0
7.0
2
2
2
2
2
2
2
2
2
2
2.0
2.0
2.0
2.0
3.0
2.0
2.0
2.0
2.0
2.5
2.0
2.0
2.0
2.0
3.0
2.0
2.0
2.0
2.0
2.0
3.0
3.0
3.0
3.0
1.0
3.0
3.0
3.0
3.0
2.5
7.0
7.5
7.5
7.5
7.5
7.5
7.5
7.5
7.5
7.5
2
2
2
2
2
2
2
2
2
2
2.0
3.0
2.5
2.5
2.5
2.5
2.5
2.5
2.5
2.5
3.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.5
3.0
3.0
3.0
3.0
3.0
3.0
3,0
3.0
7.8
7.8
2
2
2.8
2.8
2.0
2.0
3.0
3.0
7.8
2
2.8
2.0
3.0
190
LacollT.Gayet ct al
Appendix 1. Aristotle Basic Complexity Score (Cont'd)
N
Procedures
103
Coarctation repair, Interposition graft
PAPVC, scimitar, repair
Systemic venous stenosis repair
TOF repair, no ventriculotomy
TOF repair, ventriculotomy, transanular patch
TOF repair, RV-PA conduit
Conduit reoperation
Conduit placement, LV to PA
Valvuloplasty, aortic
Aortic root replacement
Valvuloplasty, mitral
Mitral stenosis, supravalvar mitral ring repair
Coarctation repair, end to end, extended
Arrhythmia surgery-atrial, surgical ablation
Hemifontan
Aneurysm, ventricular, right, repair
Aneurysm, pulmonary artery, repair
Cardiac tumor resection
Pulmonary embolectomY
LV to aorta tunnel repair
Valve replacement, aortic (AVR), homograft
Senning
Aortic root replacement, meChanical
Aortic aneurysm repair
VSD, multiple, repair
VSD creation/enlargement
AVe (AVSD) repair, complete (CAVSD)
Pulmonary artery origin from ascending aorta
(hemitruncus) repair
TAPVC repair
Pulmonary atresia-VSD Oncluding TOF, PAl repair
Valve closure, tricuspid (exclusion, univentricular
approach)
1 1/2 ventricular repair
Fontan, atrio-pulmonary connection
Fontan, atria-ventricular connection
Fontan, TCPC, lateral tunnel, fenestrated
Fonlan, TCPC, lateral tunnel. non-fenestrated
Fontan, TCPC, external conduit, Fenestrated
Fontan, TCPC, external conduit, non-fenestrated
Congenitally corrected TGA repair, VSD closure
Mustard
PUlmonary artery sling repair
Aneurysm, ventricular, left, repair
TOF - absent pUlmonary valve repair
Transplant, heart
Aortic root replacement, homograft
Damus-Kaye-Stansel procedure (DKS) (creation of
AP anastomosis without arch reconstruction)
Arterial switch operation (ASO)
Rastelli
Anomalous origin of coronary artery from
pulmonary artery repair
Ross procedure
DORV, Intraventricular tunnel repair
Interrupted aortic arch repair
Truncus arteriosus repair
TOF - AVC (AVSD) repair
22
28
29
31
32
49
53
54
58
68
69
100
118
128
129
131
132
134
67
57
90
59
109
10
11
13
17
23
35
41
44
78
79
80
81
82
83
86
91
108
130
34
73
60
124
88
92
96
61
94
105
18
33
Basic
Score
Levels
Mortality
Morbidity
Difficulty
2.8
3.0
3.0
2.0
3.0
3.0
9.0
9.0
2
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
9.0
9.0
9.0
3
3
3
3.0
3.0
3.0
3.0
3.0
3.0
4.0
3.0
2.0
9.0
9.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
9.3
9.3
9.5
9.5
3
3
3
3
3
3
3
3
3
3
3
3
3
3
3
10.0
10.0
10.0
4
4
4
10.3
10.3
10.8
11.0
11.0
4
4
4
4
4
7.8
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.0
8.3
8.5
8.5
8.8
8.8
9.0
9.0
9.0
9.0
9.0
9.0
9.0
9.0
9.0
9.0
9.0
3.0
2.0
2.0
2.0
3.0
2.0
3.0
3.0
3.0
3.0
2.0
2.5
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
2.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.5
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
2.0
3.0
3.0
3.0
3.0
3.3
2.3
2.0
2.5
2.0
3.5
3.0
2.8
2.5
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.5
3,0
3,5
3.0
3.0
3.0
3.0
3.0
3.0
3.0
3.5
3.3
3.0
2.5
3.0
3.3
3.5
2.0
3.0
4.0
3.0
3.0
3,5
3.5
3.0
3.0
3.0
3.5
4.0
4.0
2.3
4.0
4.0
3.0
3.0
4.0
3.3
3.8
4.0
4.0
3.0
3.0
3.0
3.0
4.0
4.0
4.0
191
Aristotle Score for Congenital Heart Surgery
Appendix 1. Aristotle Basic Complexity Score (Cont'd)
N
Procedures
36
Pulmonary atresia· VSD - MAPCA (pseudotruncus)
repair
Unifocalization MAPCA(s)
Konno procedure
Congenitally corrected TGA repair, atrial switch
and Rastelli
Congenitally corrected TGA repair, VSD closure
and lV to PA conduit
Arterial switch operation (ASO) and VSD repair
REV
DOlV repair
Aortic dissection repair
Pulmonary venous stenosis repair
Partial left ventrlculectomy (lV volume reduction
surgery) (Batista)
Transplant, lung(s)
Ross-Konno procedure
Transplant, heart and lung(s)
Congenitally corrected TGA repair, atrial switch
and ASO (double sWitch)
Norwood procedure
HlHS biventricular repair
37
62
85
87
89
93
95
110
25
75
112
63
74
84
71
72
Basic
Score Levels Mortality Morbidity Difficulty
11.0
11.0
11.0
4
4
4
4.0
4.0
4.0
3.0
3.0
3.0
4.0
4.0
4.0
11.0
4
4.0
3.0
4.0
11.0
11.0
11.0
11.0
11.0
12.0
4
4
4
4
4
4
4.0
4.0
4.0
4.0
4.0
4.0
3.0
3.0
3.0
3.0
3.0
4.0
4.0
4.0
4.0
4.0
4.0
4.0
12.0
12.0
12.5
13.3
4
4
4
4
4.0
4.0
4.5
4.0
4.0
4.0
3.0
5.0
4.0
4.0
5.0
4.3
13.8
14.5
15.0
4
4
4
5.0
5.0
5.0
3.8
4.5
5.0
5.0
5.0
5.0
Report of the Taskforce on
Paediatric Cardiac Services
6August 2006
Queensland
Government
Queensland Health
Report of the Taskforce on Paediatric Cardiac Services
2
Report of the Taskforce on Paediatric Cardiac Services
Executive Summary
Queensland's children and parents are fortunate to have been served over past decades by two great
children's hospitals - the Royal Children's Hospital and the Mater Children's Hospital - and by the
expertise of cardiac surgeons and other highly trained staff at The Prince Charles Hospital.
The outcomes of the recent Review of Paediatric Cardiac Services, chaired by Professor Craig Mellis
(the Mellis Review), indicated that Queensland's growing population may be best served for the future
by a new model of care.
The Mellis Review initially focussed on the provision of paediatric cardiac services in a cardiac unit at
The Prince Charles Hospital. However, during the course of the review, the Review Panel formed the
view that the problems that it identified with these services were in large part attributable to the
fragmentation of paediatric tertiary services in Queensland between The Prince Charles Hospital, the
Royal Children's Hospital and the Mater Children's Hospital.
A key theme of the Mellis Review was that this "fragmented model" of delivering paediatric tertiary
services in Queensland was unsustainable and not in the interests of children. The Mellis Review
recommendations not only included the need to ensure that all infants and children with cardiac disease
are operated on in a tertiary children's hospital, but that all of the paediatric services at the three
hospitals be transferred to a new, single Queensland Children's Hospital.
The Taskforce on Paediatric Cardiac Services was established by government on 27 March 2006 in
response to the Mellis Review recommendations. The terms of reference of the Taskforce are annexed
as Attachment A to this report.
Taskforce membership included clinical specialists, parents (including parents of children with
congential heart conditions), and senior Queensland Health managers including the Director-General,
who chaired the Taskforce. A complete list of the members of the Taskforce is annexed as Attachment
B to this report.
The Taskforce met formally on four occasions and received more than fifty written submissions
between 1 April 2006 and 30 June 2006. A complete list of submissions is annexed as Attachment C
to this report. Taskforce deliberations were based on the expertise of Taskforce members, site visits to
The Royal Children's Hospital (RCH), The Mater Children's Hospital (MCH) and The Prince Charles
Hospital (TPCH), written submissions received by the Taskforce, and analysis of relevant material
including:
•
reviews of tertiary paediatric services in Queensland;
•
reviews of tertiary paediatric services in other jurisdictions, nationally and internationally;
•
current and projected data On paediatric service delivery in Queensland; and
iii
Report of the Taskforce on Paediatric Cardiac Services
•
identification and analysis of three principal approaches to the delivery of hospital paediatric
services in general and tertiary services in particular.
In addressing its terms of reference, which focused on the systems changes required to improve
services to children, the Taskforce sought to answer the following questions:
•
Is the single children's hospital, as recommended in the Mellis Review, the service delivery
model that ensures that the children of Queensland receive the optimal standard of paediatric
cardiac care?
•
If so, what are the ways in which this model might be implemented in Queensland and what
•
Ifnot, what alternative models should be considered and why might they be more appropriate?
are the implications of this approach for the provision of paediatric services as a whole?
The Taskforce identified two key principles fundamental to achieving its task:
•
that any new service should be based on best evidence in the treatment of children and the
inclusion of families in their care; and
•
that any new service should maximise the opportunity for research and recruitment, training,
retention and accreditation of a specialised paediatric workforce.
The Taskforce endorses the main recommendation of the Mellis Review that a new single children's
hospital, called the Queensland Children's Hospital, should be built.
The Taskforce also recommends that the new hospital should incorporate all paediatric services
currently provided at the Mater Children's Hospital, the Royal Children's Hospital and The Prince
Charles Hospital and be the hub of a State-wide paediatric and adolescent services network.
After considering the options for establishing a new hospital, the Taskforce concludes that it should be
located adjacent to the Mater Hospital or the Royal Brisbane and Women's Hospital to gain the
benefits not only of the proud history of the south-east children's hospitals, but also to enable access to
the range of specialist services needed to ensure that children receive optimal care.
The final decision about the site for a new hospital is a matter for Government. To assist Government
in determining this issue, the Taskforce developed a range of criteria and assessed all available options
against those criteria. The results are set out at Section F of the report.
Ensuring the best possible care for our children is about more than just a building. Following
Government's decision to establish a Queensland Children's Hospital, the Taskforce considers that a
senior clinical leader should be appointed immediately to deliver an integrated planning process that
engages clinicians across the three affected hospitals. This process could involve extensive consultation
and collaboration with all stakeholders, including other paediatric clinicians, parents and patients.
iv
Report of the Taskforce on Paediatric Cardiac Services
A priority for the planning process should be the creation of a new, single, child-centred culture that
overcomes current barriers to achieving a unified service. These barriers result from the physical
distance between the existing hospitals and from long-standing cultural and relationship issues.
Another key issue that the Taskforce wishes to see addressed is the need for better services for young
people and adolescents, including transitional services to adult care.
Establishing a new Queensland Children's Hospital will take at least three to five years. The Taskforce
has made a number of interim recommendations to manage the current service more effectively in the
meantime. These emphasise the need to improve the safety and effectiveness of paediatric cardiac
services at TPCH until these services can be moved to an interim location, preferably on the site of the
new children's hospital, within 12 to 18 months.
The Taskforce recommends that additional resources should be made available to support these interim
arrangements and that clinical staff should be directly involved in developing transitional and longterm plans.
v
Report of the Taskforce on Paediatric Cardiac Services
vi
Report of the Taskforce on Paediatric Cardiac Services
Contents
. Summary
E xecutlve
...
111
A. Recommendations
9
B. Paediatric Health Services in Queensland
Tertiary Paediatric Services
General Paediatric Services
Queensland paediatric health care activity data
c. Reviews of paediatric services and models of care
Queensland reviews of paediatric services
International reviews of paediatric services
Mode Is of care identified in the reviews
11
11
12
12
17
17
19
23
D. Submissions
29
E. The need for a new, single Queensland Children's Hospital
31
Provision of paediatric cardiac services in an adult cardiac unit
Provision of paediatric intensive care services
Benefits of a single tertiary children's hospital
31
31
32
F. Assessment of options for a new Queensland Children's HospitaL
33
G. Where to from here? More than just a building
49
H. Interim arrangements for paediatric cardiac services currently
provided at The Prince Charles Hospital.
51
I. Attachments
53
Attachment A: Terms of Reference
Attachment B: Membership of Taskforce
Attachment C: Submissions to Taskforce
Attachment D: Paediatric Cardiac Services Taskforce - Service Profile and Budget Analysis
Attachment E: Profile of tertiary services and current linkages between hospitals
Attachment F: Family care principles
J. Bibliography
53
54
55
57
58
68
69
vii
Report of the Taskforce on Paediatric Cardiac Services
viii
Report of the Taskforce on Paediatric Cardiac Services
A. Recommendations
In its deliberations, Taskforce members agreed that any recommendations should be based on best
evidence on the treatment of children and the inclusion of families in their care. The Taskforce
recommends the following:
A new Queensland Children's Hospital
1.
A new single children's hospital, to be called the Queensland Children's Hospital, should be
built within five years.
2.
The new Queensland Children's Hospital should be the hub ofa State-wide paediatric and
adolescent services network.
3.
The Queensland Children's Hospital should incorporate all paediatric services, both tertiary
and general, currently provided at Mater Children's Hospital, Royal Children's Hospital and
The Prince Charles Hospital.
4.
The Queensland Children's Hospital should be located adjacent to the Mater Hospital or the
Royal Brisbane and Women's Hospital.
5.
Government should note the Taskforce's initial analysis of relative suitability of the two sites
and potential budget implications. Further detailed analysis of sites and budget implications is
required.
6.
Government should make an early decision on a preferred site for a new children's hospital, in
order to support appropriate service planning and safety considerations.
7.
Following Government's decision on a preferred site for a Queensland Children's Hospital, a
senior clinical leader should be appointed immediately to manage an integrated planning
process that engages clinicians at The Prince Charles Hospital, the Mater Children's Hospital,
and the Royal Children's Hospital and across the State.
8.
A priority for the planning process should be the creation of a new, single child-centred
culture for the new paediatric hospital.
9.
The planning process should also involve extensive consultation and collaboration with other
stakeholders, parents and patients.
10. The new Queensland Children's Hospital should include services for young people and
adolescents, including transitional services to adult care.
11. Improved research capacity needs to be an important feature of the new hospital.
Interim Arrangements
12. As a matter of urgency, safety and sustainability, paediatric cardiac services at TPCH should
be improved through additional resources.
9
Report of the Taskforce on Paediatric Cardiac Services
13. Paediatric cardiac services should be moved to a new location at a tertiary paediatric centre
within 12 -18 months, preferably to the future site of the new children's hospital.
14. The currently planned redevelopment of the paediatric intensive care unit and paediatric ward
at TPCH should not proceed.
15. Appropriate steps should be taken to ensure that clinical staff in TPCH are directly involved in
the planning of transitional and long-term arrangements.
16. The new clinical leader will be responsible for the planning and implementation of agreed
interim arrangements.
10
Report of the Taskforce on Paediatric Cardiac Services
B. Paediatric Health Services in Queensland
Paediatric health care includes the range of health care provided to infants and children, including
primary and community-based health care and hospital care. In Queensland, hospital care is provided to
infants and children across the State by public and private hospitals.
Hospital care for children can be divided into two categories. High intensity, tertiary paediatric care can
be delivered by dedicated specialists who are specifically trained in a paediatric super-specialty; and
lower intensity, general paediatric care can be delivered by specialists in general paediatric medicine. It
is noted that some paediatric sub-specialties, particularly in surgical disciplines, are provided by
specialists who also provide services to adults.
Tertiary Paediatric Services
Tertiary paediatric services can include particular medical or surgical sub-specialties of paediatrics
such as paediatric neurology, paediatric oncology and paediatric
neuro-surgery. Tertiary services can also include super specialist services for children with the most
complex needs, whose treatment is likely to involve multiple specialists and sub-specialists. Complex
paediatric cardiac surgery falls into this category, as does, for example, clinical genetics,
transplantation services and cranio-facial surgery.
Queensland's tertiary paediatric services are predominantly provided by The Mater Children's Hospital
(MCH) and the Royal Children's Hospital (RCH). The various tertiary and State-wide services
provided by these two hospitals were mapped out in Queensland Health's Strategic Planning Process
for sub-speciality and Super-speciality Paediatric Services (2002). With respect to paediatric cardiac
surgery, the same strategic planning process concluded that complex cardiac surgery and invasive
cardiac assessment should be provided from a single site at TPCH but only until such times as the then
current review had concluded.
Tertiary paediatric services currently provided by MCH and RCH, other than paediatric cardiac
services which are provided at TPCH, are set out below.
1.
Paediatric services provided solely by RCH.
•
•
•
•
•
•
•
Clinical Genetics
Liver transplantation
Haemophilia Service
Bums Service
Gastroenterology Service
Cerebral palsy
Rehabilitation
2.
Paediatric services provided solely by MCH
3.
• Renal Transplantation Service
•
Sleep Disorders
• Epilepsy
•
Complex Cranio-facial surgery services
Paediatric services provided by both MCH and RCH at two (or more) sites:
11
Report of the Taskforce on Paediatric Cardiac Services
•
•
•
•
•
•
•
•
•
•
•
•
Metabolic Medicine Service
Cochlear Implant Service
Oncology Service
Medical Imaging
Respiratory Service
Neurosurgery Service
Paediatric Intensive Care Service
Neurology Service
Endocrinology Service
Orthopaedic Service
Developmental Paediatrics
Cardiology services
Further detail on tertiary and associated services provided across the main hospitals in Brisbane is
annexed in Attachment E to this report.
General Paediatric Services
Low risk, high volume, paediatric treatment and care take place on a daily basis, in regional hospitals
across the State. This includes general medical and general surgical interventions for children by
specialists who may also treat adults. The great majority of hospital paediatric care falls into this
category. In addition to providing tertiary paediatric care, the RCH and MCH also provide general
paediatric treatment and care for children in their catchment areas. TPCH provides no general or
tertiary paediatric care other than paediatric cardiac services.
Queensland paediatric health care activity data
Total hospital paediatric activity
The total of all hospital paediatric (children 0-14 years) separations in 2004/05 was
149,685. Of these 38,783 were privately-conducted procedures (see table below). It should be noted
that figures available for use in this discussion paper only relate to children 0 -14 years, but not to
children aged 15 and 16 years who are admitted to the three children's facilities in question. The source
of the following data is Queensland Health's Acute Inpatient Data Collection 2004-05.
12
Report of the Taskforce on Paediatric Cardiac Services
The following table breaks activity down by Area Health Service:
Table 1 : 0-14 Age Group - All Separations - 2004/05
Sum of Separations
Northern
Area of Residence
Northern
Central
Southern
Interstate/Unallocated Qld
Percentage
Central
19,247
175
56
263
13%
19,741
1,290
37,890
6,388
1,030
31%
46,598
Area of Treatment
Southern
All Private
Hospitals
QH
Mater Public
110
37
5,964
1,104
13,208
370
26,908
18,583
15,089
452
538
983
30%
26%
27,853
Grand Total
(Source: 2004/05 QH Acute Inpatient Data Collection)
16,755
38,738
Grand
Total
26,648
52,747
67,024
3,266
100%
149,685
The following chart graphically illustrates the geographical distribution of the above paediatric activity.
To aid understanding of the contribution of the Mater Hospital it is presented separately in the
following diagram. As noted above when the percentage of public paediatric activity conducted at the
Mater is added to that done elsewhere in the Southern Area, the total equals 30 %.
IC
Northern
II1II Central
Private, 26%
C Southern
E:I Mater
•
Private
Northern, 13%
Mater, 11%
Central,31%
Southern, 19%
RCH, MCH and TPCH paediatric separations
In 2004/05, RCH recorded 15,555 paediatric inpatient separations, the MCH recorded 12,748 paediatric
inpatients and the TPCH recorded 749 paediatric inpatient separations. This totals 29,052 paediatric
inpatient separations across the three children's services. These are broken down into service related
groups in the table which follows.
In addition, during the same period, 3964 inpatient paediatric patients were treated at Mater
Mother's Hospital. When included, the total number of children admitted as inpatients increases to
33,016 for 2004/05. A further 3754 paediatric inpatients were treated privately at Mater Private
Hospital in 2004/05.
13
Report of the Taskforce on Paediatric Cardiac Services
The following table provides a breakdown of paediatric separations across the MCH, RCH and TPCH.
Table 2 - Breakdown of Paediatric Separations across MCH, TPCH, and RCH
Specialty Related Group
Cardiology
Interventional Cardiology
Dermatology
Endocrinology
Gastroenterology
Diagnostic GI Endoscopy
Haematology
Immunology & Infections
Medical Oncology
Chemotherapy & Radiotherapy
Neurology
Renal Medicine
Respiratory Medicine
Rheumatology
Non Subspecialty Medicine
Breast Surgery
Cardiothacic Surgery
Colorectal Surgery
Upper GIT Surgery
Head & Neck Surgery
Neurosurgery
Dentistry
Ear, Nose & Throat
Orthopaedics
Ophthalmology
Plastic & Reconstructive Surgery
Urology
Non Subspecialty Surgery
Transplantation
Extensive Burns
Tracheostomy
Gynaecology
Qualified Neonate
Unqualified Neonate
Drug & Alcohol
Psychiatry - Acute
Unallocated
Non-acute
Grand Total
MCH
Separations
TCPH
Separations
RCB
Separations
Total
Separations
90
1
165
292
178
140
531
413
66
315
408
76
1,554
171
1,825
4
4
65
44
33
232
284
1,315
1,042
245
246
359
1,919
6
9
45
20
290
0
139
128
87
7
12,748
181
182
2
4
2
0
6
5
0
0
2
0
25
4
19
0
241
0
0
0
0
0
0
3
0
2
1
24
1
0
0
0
39
4
1
1
0
0
749
116
0
122
311
269
680
911
605
377
1,095
636
63
1,369
235
1,962
5
11
95
77
47
354
640
1,539
741
446
278
297
1,340
5
55
34
25
256
0
103
219
148
89
15,555
387
183
289
607
449
820
1,448
1,023
443
1,410
1,046
139
2,948
410
3,806
9
256
160
121
80
586
924
2,854
1,786
691
526
657
3,283
12
64
79
45
585
4
243
348
235
96
29,052
(Source: 2004/05 QH Acute Inpatient Data Collection)
14
Report of the Taskforce on Paediatric Cardiac Services
The following table breaks down the above total admissions data into emergency and non-emergency
paediatric separations for children 0-14 years in each of the three hospitals.
Table 3: Emergency and non-emergency paediatric separations for children 0-14 years across
MCH, RCH and TPCH
MCH Separation
RCH Separations
TCPH Separations
6123
5,784
51
Emergency
Non-emergency
9,771
698
6625
Current Resource Commitment
The current paediatric service provided by MCH, TCPH and RCH provides a total of around 296
paediatric beds, of which 21 are paediatric intensive care beds.
Of the 275 inpatient / day surgery beds, 160 are at the RCH, approximately 95 are public beds in the
MCH (the Mater also has 32 private children's beds) and 20 are in TPCH.
Of the 21 paediatric intensive care beds, 8 paediatric intensive care beds are available at the MCH and
RCH sites respectively and 5 at TPCH.
Resources currently allocated across Royal Children's Hospital, The Mater Children's Hospital and
The Prince Charles Hospital for the provision of children's services and a further activity breakdown
are annexed in the service profile, Attachment D.
Projected population increases
Population increases in Queensland are likely to lead to corresponding increases in demand for health
services. The projected increases in the children's population for Queensland (0 -14 yrs) are outlined in
the table below.
While projections may not be realised, it is worthwhile noting that based on population growth,
demand for paediatric services in the Southern Area Health Services region is projected to grow at
three times the rate of demand for paediatric services in the Central and Northern Area Health Service
regiOns.
Table 4 Population projections for 0 - 14 years from 2001 through to 2021
Zone
2001 Population 0 -14 years
Population Projections 0 -14 years
2016
Northern
Central
136,802
296,835
364,269
138,503
299,580
385,002
Percentage
Increase
1.24%
2021
0.92%
5.69%
3.16%
307,556
402,252
851,258
141,450
Percentage
Increase
3.40%
3.61%
10.42%
Southern
6.68%
TOTAL
797,906
823,085
(Source: 2001 population figures are based on 2001 Census data. Projections were provided by
Queensland Health planning data.)
15
Report of the Taskforce on Paediatric Cardiac Services
16
Report of the Taskforce on Paediatric Cardiac Services
c. Reviews of paediatric services and models of care
Queensland reviews of paediatric services
Since the early 1990s a range of reviews of paediatric services have taken place without resulting in a
significant resolution of the issues considered.
1992/1993 South East Queensland Hospital Services Planning Project
A review of paediatric services in general conducted in 1992/93, as articulated in the South East
Queensland Hospital Services Planning Project paper (March 1993), identified three options for the
future development of paediatric services, namely:
•
to consolidate the two paediatric hospitals (RCH, MCH) into a single tertiary paediatric
hospital;
•
to retain two tertiary specialist paediatric hospitals; or
• To create one major tertiary centre (RCH) and retain the other paediatric hospital as a major
hospital servicing South Brisbane with limited tertiary specialisation.
The recommendation in 1993, was that "more detailed analysis and consultation
determine whether these or other options should be accepted".
IS
required to
2002 Strategic Planning Process for sub-speciality and super-speciality
Paediatric Services
The 2002 Strategic Planning Process for sub-speciality and super-speciality Paediatric Services sets out
the various tertiary paediatric services to be provided by MCH and RCH. Additionally it concluded
that:
•
•
•
complex cardiac surgery and invasive cardiac assessment were to be provided from a single
site at TPCH;
visiting cardiac surgeons from TPCH would perform surgery for a limited number of stated
procedures at both the RCH and MCH; and
outpatient clinics would be provided to the RCH by staff from TPCH (private practice clinics)
and by the MCH cardiologist at the Mater Children's Hospital.
Further, the process concluded that these arrangements were subject to further review of paediatric
cardiac services and paediatric intensive care services.
2004 Paediatric Intensive Care Services Discussion Paper
In recognition of the need to reorganise Paediatric Intensive Care Services, an initiative was undertaken
in March 2004 to establish an integrated Paediatric Intensive Care service (QPICs).
The discussion paper on QPICs was prepared by Dr Anthony Slater, the Director of the Queensland
Paediatric Intensive Care Services in November 2004 and submitted to the Queensland Health Systems
Review in July 2005. The discussion paper identified issues that needed to be addressed to ensure the
success of the Paediatric Intensive Care service, in particular, problems arising from the splitting of the
17
Report of the Taskforce on Paediatric Cardiac Services
service into three small units. Problems identified included that all three units were smaller than the
recommended minimum size, dilution of clinical experience, impediments to establishing effective
teamwork, difficulty in maintaining an adequate skills base in all three units, and that the structure was
highly inefficient and expensive.
The discussion paper identified the location of the Paediatric Cardiac Service as being central to the
need for reorganisation of the paediatric intensive care. The discussion paper recommended, amongst
other things, that the number of paediatric intensive care units (PICD) in Brisbane be reduced from
three to two and that this be achieved by the relocation of the paediatric cardiac services to a children's
hospital, with one of the two units established as a large Level III PICD that provides complex care,
and the other as a smaller Level II unit.
2005 Queensland Health Systems Review
The Final Report of the Queensland Health Systems Review (Forster) stated that:
"the duplication of expensive tertiary paediatric sub-specialty services at both the Royal
Children's Hospital and the Mater Children's Hospital does not appear to be a sustainable
model. Rationalisation is recommended to improve service sustainability, maximise available
resources and reduce pressure on staff currently experiencing onerous on-call arrangements."
2006 Review of Paediatric Cardiac Services (the Mellis Review)
The Review of Paediatric Cardiac Services (the Review) was commissioned by the Director-General of
Queensland Health primarily in response to previously expressed concerns about a series of deaths
following paediatric cardiac surgery at The Prince Charles Hospital. Additionally, the Coroner made a
recommendation that Queensland Health consider the best approach to the delivery of specialist cardiac
services following the death of a child at the Royal Children's Hospital. As indicated above, the
Queensland Health Systems Review also stated that the duplication of tertiary paediatric sub-specialty
services at the Royal Children's and the Mater Children's Hospitals appeared unsustainable.
While the terms of reference of the Mellis Review focussed on paediatric cardiac services, the Review
panel assumed a broader brief and made significant systemic recommendations about the delivery of all
paediatric services. It also expressed the view that "the Norwood procedure should not be performed in
Queensland, at least until a properly staff Paediatric Cardiac Service has been established at TPCH"(at
p.12). Queensland Health has suspended performing the Norwood procedure in Queensland since
September 2005 as a result of an earlier clinical audit.
The key systemic themes of the Review were:
• The current fragmented model is unsustainable and the interests of children would be best
served by consolidating the current paediatric services into a single children's' hospital, to be
called the Queensland Children's Hospital.
• Once commissioned, the existing children's hospitals would close, and paediatric services
would move from The Prince Charles Hospital to the new hospital.
• Paediatric services should be consolidated into single, dedicated children's hospitals rather
than integrated into larger, general hospitals. Both models operate in significant institutions
around the world.
18
Report of the Taskforce on Paediatric Cardiac Services
•
•
•
The Prince Charles Hospital paediatric cardiac unit is in an unsatisfactory and unsustainable
condition, characterised by chronic understaffing, dysfunctional governance, lack of
infrastructure, lack of clinical leadership, and unsympathetic line managers. Morale is poor
and the unit is no longer able to meet current expectations and standards.
While the long-term response (5 years) is the establishment of the new hospital, the interim
response is to immediately establish an integrated paediatric cardiac program, with all staff
currently treating children reporting to the Royal Children's Hospital and additional funding
from Queensland Health to be provided through the Royal Children's Hospital.
Increases in staffing and service provision are required, including the need to increase the
number ofFTE paediatric cardiologists from 3.8 to 9 over five years.
Importantly, the Report found that individual paediatric cardiac clinicians are competent and
responsible.
International reviews of paediatric services
Paediatric services have also been the subject of extensive reviews at the international level.
Report of the Public inquiry into children's heart surgery at the Bristol
Royal Infirmary 1984-95 (the Kennedy report, July 2001)
The Kennedy Report is recognised the world over as a seminal piece in defining best practice in the
treatment of hospital paediatric patients and, in particular, paediatric cardiac patients.
In the period 1991-1995 between 30 and 35 more children under one died than might have been
expected after open heart surgery in the Bristol Unit. The service offering paediatric heart surgery at
the time was split between two sites, had no dedicated paediatric intensive care beds, no full time
paediatric cardiac surgeons and too few paediatric nurses. The Kennedy report identified widespread
systems failure, uncertainty about who was responsible for what, how things got done, and a system
where concerns took years to be taken seriously.
The Kennedy Report made 200 recommendations, a number of which are relevant to our own
circumstances. Relevant recommendations included:
•
Rec 177. There must be greater integration of primary, community, acute and specialist health
care for children.
•
Rec 178. Children's acute hospital services should ideally be located in a children's hospital,
which should be physically as close as possible to an acute general hospital. This should be
the preferred model for the future.
•
Rec 181. Specialist services for children should be organised so as to provide the best
available staff and facilities, thus providing the best possible opportunity for good outcomes.
Advice should be sought from experts on the appropriate number of patients to be treated to
achieve good outcomes. In planning and organising specialist services, the requirements of
quality and safety should prevail over considerations of ease of access.
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Report of the Taskforce on Paediatric Cardiac Services
•
Rec 193. With regard to paediatric cardiac surgery, standards should stipulate the minimum
number of procedures that must be performed in a hospital over a given period of time.
Paediatric cardiac surgery (PCS) must not be undertaken in hospitals that do not meet the
minimum number of procedures. Considerations of ease of access to a hospital should not be
taken into account in determining whether PCS should be undertaken at that hospital.
•
Rec 194. With regard to surgeons who undertake paediatric cardiac surgery, although not
stipulating the number of sessions sufficient to maintain competence, it may be that 4 sessions
per week should be the minimum number required (it is noted that Taskforce members raised
that there has been some debate about whether the 4 sessions referred to in the
recommendations were paediatric cardiac surgery sessions or paediatric/adult cardiac surgery
sessions).
Specialised Pediatric Services Review - Report of the Minister's
Advisory Committee 2002-0ntario Ministry of Health and Long
Term Care, Canada
The review provided the Minister for Health and Long-Term Care with recommendations for the future
delivery of specialised paediatric services in Ontario, Canada. The review built on the work of the
Canadian Health Services Restructuring Commission's provincial review of specialized paediatric
services, which highlighted,
in relation to paediatric and adult cardiac surgery, a relationship between low volumes of work and
higher mortality rates (p.ll).
Key considerations of the review included:
•
•
•
•
changes in paediatric cardiac surgery practice;
the positive relationship between volume of work and outcomes;
the need to focus on the best interest of children;
interdependencies among paediatric cardiac surgery, paediatric cardiology and other paediatric
programs (including the impact that a transfer of paediatric cardiac services to a hospital
would have on demand for its other paediatric programs);
•
accessibility; and
•
program cost.
Recommendations included the need for coordination of tertiary paediatric services in the province;
centralising of tertiary paediatric cardiac surgery on one site; centralising on-site surgical back up and
immediate post-operative intensive care; and the creation of a regional model for paediatric intensive
care.
The Report of the Paediatric and Congenital Cardiac Services Review
Group, UK, 2003
This review was one of a number in the UK that followed and built on the recommendations of the
Kennedy Report. Following a review of 14 facilities, the Paediatric and Congenital Cardiac Services
Review Group determined that in terms of paediatrics as a whole, there remained a mix of paediatric
and adult work being done in some units whilst others concentrated purely on children.
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Report of the Taskforce on Paediatric Cardiac Services
The review team found there was no evidence to suggest that one model was inherently superior to any
other. The key criterion appeared to be a commitment to a service tailored to meeting the changing
needs of the child. Similarly, it found that no one model was consistently better at handling the
transition to adult services.
The report found limited evidence to support or help determine what a minium number should be. The
report referred to an American study of paediatric congenital cardiac surgery which concluded that
mortality risk was lower at an institution performing more than 300 cases annually. This led the
Review Group to recommend a threshold for cardiac surgery in children at this level and endorse the
Kennedy recommendation that four operating sessions per week would prevent occasional practice for
surgeons.
This report also concluded that the care of patients with a congenital heart condition does not begin and
end at the tertiary centre. For many patients who live some distance away it is essential that local health
services provided by hospital and community-based staff can support them.
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Report of the Taskforce on Paediatric Cardiac Services
Getting the right start: National Services Framework for Children (NSF)Standard for Hospital Services, Department of Health, UK 2003
Issued by the NBS Department of Health in a further response to the Kennedy report, this framework
was one of the first in the UK. The document set a standard for the care of children and young people
when they are in hospital. It advised that child friendly hospitals recognise that children are not the
same as adults.
The NSF suggested that:
'there is nothing we can do to completely take away (children's) concerns but there is a lot we
can do to improve the way hospitals care for children so they can get on with the important
business of childhood and growing up. That means designing hospital services for children
from the child's point of view.'
The NSF advised that child-centred hospital services are those that:
•
•
•
•
•
•
•
consider the 'whole child', not simply the illness being treated;
treat children as children, and young people as young people;
are concerned with the overall experience for the child and family;
treat children, young people and parents as partners in care;
integrate and co-ordinate services around the child and family's particular needs;
graduate smoothly into adult services at the right time; and
work in partnership with children, young people, and parents to plan and shape services and to
develop the workforce.
In highlighting the differences between services for children and adults the NSF said:
•
•
•
•
•
•
•
Children are different from adults, so they need distinct and tailored services.
Children's physiology differs from that of adults and changes as they grow and develop.
Children suffer from a different range of diseases and disorders to those commonly seen in adults.
This includes a higher proportion of rare and often complex congenital and inherited disorders.
Children's mental capacity and level of understanding, for example about their bodies, illness
and death, may di ffer from that of most adults, and changes as they develop.
Children's legal status, for example, in respect of consent to treatment, differs from that of
adults, and changes, in the eyes of the courts, at certain key points in chronological age, and
with developmental and emotional factors.
Children are more vulnerable than most adults, and have a greater need for safeguarding their
welfare.
Children using health services are usually accompanied by a parent or other responsible adult.
This person may have distinct legal rights in respect of the child, for instance over consent to
treatment. They will also have their own needs, for example, for explanation and reassurance.
Children are strongly affected by the context in which they live. Usually the most important
element ofthis context is the family; followed by friends, school, neighbourhood and community.
Children will become adults; and there is a growing understanding of the effects of childhood
experiences, including illness, on their adult life.
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Report of the Taskforce on Paediatric Cardiac Services
The NSF advised that for parents and children, one of the biggest areas of frustration is the seeming
lack of integration between different elements of service: different organisations, even different
services or departments in the same hospital, not sharing information, not coinciding timings or
consultations; and not being 'in tune'.
In a similar vein, it declared that children with complex health needs often require input from a number
of different specialties. This requires careful coordination, if the parent is not to be left as solitary
lynchpin in a chaotic system. Parents have expressed the need for a key worker to help them negotiate
their way around the system and support them in accessing the different services available.
In terms of transition from child services to adult services, the NSF advised that young people with
long-term conditions need preparation for the move from children's to adult services. All young people
with ongoing health needs should have a plan developed with them for the transition of their care to
adult services, which is coordinated by a named person.
The NSF for Children also focuses on tertiary services. It suggests that:
Children's services should have robust arrangements for timely access to tertiary care when needed:
both for emergency transfers to a specialised (regional) centre - for instance for paediatric intensive
care or surgery; and for planned referrals - for example to cardiology, neurology, or renal care, for
assessment.
Models of care identified in the reviews
Literature examined by the Taskforce referred to three models of paediatric health care relevant to the
Taskforce terms of reference, namely:
•
•
•
a combined model, where cardiac surgery is provided to adults and children in the same
hospital facility;
a child-centred model, where general and tertiary paediatric services, including cardiac
surgery, are provided to children in a dedicated children's hospital; and
a network model, where services to children are delivered through a number of networked
facilities.
While the combined model and child-centred model are mutually exclusive models, both are
compatible with a network model.
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Report of the Taskforce on Paediatric Cardiac Services
Combined model
Description
In this model paediatric cardiac surgery is undertaken in a cardiothoracic unit which is part of a large
acute general hospital. Generally, there are both dedicated paediatric surgeons and surgeons who
operate both on adults and on children on site. Children's wards and facilities are likely to be adjacent
to adult wards and facilities and resources are sometimes shared between the two.
This approach is the closest to that employed in TPCH. Examples include;
1.
The Newcastle upon Tyne Hospitals NHS Trust ,UK (www.newcastle-hospitals.org.uk)
2.
The Royal Brompton and Harefield NHS Trust (www.rbht.nhs.uk)
Children and Adult heart surgery is also undertaken in facilities dedicated solely to the treatment of
heart disease. These Heart Institutes are often national centres of excellence. They can be stand alone or
built adjacent to general hospital facilities.
3.
The German Heart Institute Berlin (www.dhzb.de/english/various.htm)
4.
The Baroda Heart Institute and Research Centre (BHRIC),Gujarat, India (www.bhirc.com)
Strengths
•
Clinical outcomes for children are equivalent to those obtained where other models are
practiced.
•
Surgeons with adult practice in the same hospital are able to provide continuity of care for
their paediatric patients into adulthood.
•
Surgeons can uphold their surgical competence through a mix of adult and paediatric practice.
•
There are benefits that come with shared infrastructure and technology essential for cardiac
services, for example ECG and some diagnostic equipment.
Weaknesses
•
Children are not just small adults and have medical and surgical problems and needs that
require a full range of children's services around them.
•
Following a series of reviews that highlighted the special needs of children, separation of
children on the basis of organs is increasingly out of favour in many countries including
Australia, New Zealand, the United Kingdom and the United States of America.
•
A child/adult facility is unlikely to be able to attract and keep the full range of paediatric staff
required to adequately meet the needs of children.
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Report of the Taskforce on Paediatric Cardiac Services
•
A combined approach to child/adult care does not lend itself to appropriate levels of training
for professionals who wish to maintain their current skills or develop new ones - there is often
a need to share staff.
•
A limited child and family friendly environment is likely to exist in ajoint child/adult facility.
•
A child facility in an adult hospital may have difficulty in competing for additional funding
and resources.
Child-centred model
Description
In this model paediatric cardiac surgical services are provided from purpose-built paediatric hospitals
that provide a full range of secondary, tertiary and support services. This approach is closest to that
employed at the Royal Children's Hospital and the Mater Children's Hospital at present for tertiary
paediatric services other than paediatric cardiac surgery.
Examples of paediatric facilities that provide a full range of general and tertiary services include:
5.
The Royal Children's Hospital, Melbourne (www.rch.org.au)
6.
The Great Ormond Street Children's Hospital, London (www.gosh.nhs.uk)
7.
The Hospital for Sick Children, Toronto (www.sickkids.ca)
8.
The Starship Children's Hospital, Auckland (www.starship.org.nz)
9.
The Children's Hospital of Philadelphia (www.chop.edu)
10.
The Texas Children's Hospital (www.texaschildrenshospital.org)
Strengths
•
On-site availability of highly trained, experienced, specialist paediatric anaesthetists and
paediatric intensive care physicians.
•
Availability of other paediatric services and specialists that children may need to access
quickly (such as paediatric intensive care, paediatric CT and MRI, foetal cardiology and
interventional cardiology, paediatric respiratory physicians, paediatric nephrologists and
paediatric surgeons).
•
Increased levels of paediatric nursing and dedicated allied health staff (such as paediatric
physiotherapists, occupational therapists).
•
Dedicated paediatric intra-operative and post-operative equipment designed specifically for
use in neonates, infants and children.
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Report of the Taskforce on Paediatric Cardiac Services
•
Better access to funding and resources (such as data retrieval and info management).
•
The specific needs of sick children are understood and do not always have to be justified (such
as facilities for families).
•
Easier to attract trained staff, provide job satisfaction and dedicated 24-hour cover.
•
Easier to provide training and plan workforce - more efficient long term.
•
This model is now the preferred model across the world and supported by evidence in the
literature.
Weaknesses
•
Transition from childhood to adulthood- including the most appropriate age to make the
transfer - is likely to be problematic if care is provided in different facilities.
•
Access to one dedicated tertiary facility if paediatric services are centralised could be
problematic both in a geographical sense for those who live regionally and in a demand sense
as population numbers grow.
Network model
In the network model, children's services are provided from a range of dedicated children's facilities
for the most specialised services (the hub) and a range of intermediate and smaller facilities for the less
major work (the spokes).
The reality is that most paediatric service providers operate within a network of feeder hospitals,
especially where tertiary services are required.
The extent to which these network arrangements are 'managed' varies. However, whether tertiary
paediatric services are provided in a dedicated children's facility or in a joint child/adult unit, evidence
suggests that robust service networks have the potential to organise services efficiently and effectively
and break down barriers between providers.
Description of Networks
A range of clinical network models exist.
•
Enclave networks closely resemble the ex\sttng collaboratives and comprise groups of
clinicians, mutual learning, standardisation and measurement of patient care outcomes. These
tend to have a flat structure with no central authority and are based on a shared commitment.
They are generally useful in sharing information and growing ideas.
•
Hierarchical networks have a whole-of-organisation perspective and are characterised by a
central body that provides leadership and guidance to the group. They have all the functions,
roles and support of enclave networks, but in addition they have more proactive management, a
key role in the planning and delivering of services and a degree of budgetary authority.
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Report of the Taskforce on Paediatric Cardiac Services
Typically led by a clinical director, this type of managed network has an expanded role in
developing consensus advice about planning, workforce issues and operational services and in
leading changes within the relevant peer group.
•
Individualistic networks are those in which an individual or organisation develops a loose
association of affiliates. They are often based on the procurement of network services through
negotiation of contracts with a range of providers.
Strengths
•
Enclave networks: shared commitment, trust, bottom up legitimacy, promotes sharing of
information
•
Hierarchical networks: coordination and control of larger projects, quality improvements,
clarification of complex divisions of labour
•
Individualistic networks: innovative, flexible and responsive to change
\Veaknesses
•
Enclave networks: subject to the commitment and motivation of members, may fail when
enthusiasm fails, may lack resources
•
Hierarchical networks: over-regulation may limit scope for innovation and attractiveness to
members, who also may not appear to provide proportional benefits
•
Individual networks: high levels of transaction costs, conflict and competition
agencies
between
Examples of Clinical Networks include:
The New South Wales Paediatric Services Network (www.health.nsw.gov.au)
2
The Cardiac Care Network of Ontario (www.ccn.on.ca)
3
The Yorkshire Cancer Network (www.yorkshire-cancernet.org.uk)
4
The South East London Clinical Cardiac Network (www.selcardiacnetwork.nhs.uk)
5
Managed Clinical Networks in Scotland (www.show.scot.nhs.uk)
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Report of the Taskforce on Paediatric Cardiac Services
28