Table : Categorisation of the prioritisation criteria Criteria Type Assessment of the criteria 1.1 There are serious consequences for the patient associated with poor quality care for the clinical condition or with poor quality of the device or procedure. Prioritisation Areas of medicine where there are serious consequences for the patient if poor quality care is delivered should be prioritised for registry development as these have the greatest impacts on patient morbidity, mortality and quality of life. Sub-optimal outcomes may also result in repeat hospitalisations and increased use of healthcare resources. This criterion was used to rank domains in terms of priority. 1.2 An evidence-based, well executed sequence of care improves patient outcomes for the clinical condition. Threshold The core purpose of clinical quality registries is to identify and address unwarranted variation from defined sequences of care. Where no evidence-based sequence of care has been defined, registries will be unable to collect longitudinal health outcome data for the eligible patient population and generate risk-adjusted reports on the appropriateness and effectiveness of health care. In some cases, the sequence of care for a clinical condition is articulated in clinical practice guidelines. Other clinical conditions may not have clinical practice guidelines that describe the appropriate sequence of care; however a well-executed sequence of care has been shown to influence patient outcomes. The importance of this criterion to the utility of a clinical quality registry was confirmed by a number of workshop participants. Where no evidence of a well-executed sequence of care was found in the literature or the existence of a functional clinical quality registry (national or international) shortlisted domains were excluded from further prioritisation. Domains that do not meet this criterion may benefit from research, epidemiological or other types of registries to improve understanding of the incidence and illness trajectory of clinical conditions and develop an evidence-based sequence of care. 1.3 Unwarranted variation from this sequence of care can be identified and addressed. Threshold Some clinical conditions may have a sequence of care, but unwanted variation from this sequence of care can be difficult to identify and/or address. This can occur where a condition has a long illness
Table 2: High cost clinical diseases, conditions and interventions DRG Description NHCDC 2012/13 costs ($) Total separations 2012/13 $ per separation All NHCDC critical care costs except Critical care (excluding neonatal) $2.40 billion >150 000 est. $16 000 I04AB, I32ABC Knee replacement, revision $1.2 billion 45 390 $26 438 I03AB, I31AB Hip replacement, revision $1.1 billion 38 838 $28 323 O60ABC Vaginal delivery $1.1 billion 202 656 $5 428 O01ABC Caesarean delivery $1.0 billion 102 007 $9 803 I06Z, I09AB Spinal fusion $0.65 billion 14 872 $43 706 L61Z Haemodialysis $0.64 billion 1.17m $547 E62ABC Respiratory infection / inflammatory $0.59 billion 80 176 $7 359 U61AB Schizophrenia disorder $0.59 billion 26 692 $22 104 G46ABC, G47ABC Gastroscopy $0.53 billion 239 709 $2 211 G02AB Major small and large bowel procedure $0.51 billion 22 981 $22 192 F41AB, F42ABC Circulatory disorder +/- acute myocardial infarction (with invasive procedure) $0.50 billion 89 817 $5 567 F12AB, F17AB, F18AB Pacemaker related $0.45 billion 18 860 $26 430 R63Z Chemotherapy $0.43 billion 347 290 $1 238 P01Z - P67ABCD Critical care costs only for neonatal admits $0.43 billion nr Nr U63AB Major affective disorder $0.43 billion 22 977 $18 714
where there were previously dispersed groups of treating clinicians. Improved data collections such as electronic health records may also provide opportunities for registries that were previously not possible. The application of threshold criteria and pragmatic grouping of conditions resulted in a of clinical domains (Table 5). Table 5: Consolidated short-list Clinical domain NHCDC potential priority Burden of disease potential priority Stakeholder-identified potential priority Adult critical care Critical care (excluding neonatal) na Critical care Neonatal critical care Critical care costs only for neonatal admits na na Musculoskeletal disorders Knee replacement, revision Hip replacement, revision Other hip and femur procedures Other joint replacement Humerus, other lower limb procedures Osteoarthritis Rheumatoid Arthritis Other Fragility fractures Osteoporotic hip fractures Surgery for joint pain (knee, shoulder, back) Joint replacement Musculoskeletal disorders Spinal fusion Back pain and problems Spinal surgery outcomes Maternity Vaginal delivery Caesarean delivery na Maternity Pregnancy outcomes Renal disease Haemodialysis na Dialysis, transplantation and organ donation Renal Mental health Schizophrenia disorder Major affective disorder Depressive disorders Suicide and self-inflicted injuries Anxiety disorders Mental health – psychosis and schizophrenia, major affective disorders Depression
Ischemic heart disease Automated implantable (AICD) related Cardiac valve procedure Pacemaker related Circulatory disorder +/- acute myocardial infarction (with invasive procedure) Coronary bypass Unstable angina, chest pain Coronary heart disease Cardiac procedures and devices High cost interventional/surgical procedures/devices Stroke Transient Ischaemic Attack (TIA), Stroke Stroke Stroke High burden cancers Lymphoma, acute and non-acute leukaemia na na High burden cancers Prostate cancer – major male pelvic procedure; surgical only na na High burden cancers Major small and large bowel procedure na na High burden cancers Rectal resection Bowel cancer Colorectal cancer High burden cancers Respiratory cancer – medical only Lung cancer na High burden cancers Breast condition procedure, reconstruction; breast malignancy Breast cancer Breast cancer surgery Breast implants Breast surgery defibrillator
Table 10: Scoring for clinical support Level of clinical support Score Established national clinical quality registry leadership group across the potential clinical domain or national clinical quality registry 1 Existing state clinical registry/audit or existing national clinical registry/audit with limited participation and/or without the characteristics of a clinical quality registry 0.75 Clinician advocacy for a registry in the potential clinical domain, registry under development, leadership group in limited jurisdictions or an existing audit or limited existing registry 0.5 Limited stakeholder engagement in development of clinical quality registries 0.25 No known existing registry resources or no known explicit clinician support for a clinical quality registry 0 Table 11: Clinical support for short listed domains Clinical domain Evidence of clinical support Current clinical quality registries Support Score Ischemic heart disease Established leadership group (Australasian Cardiac Outcomes Registry) Australasian Cardiac Outcomes Registry - Cardiac Devices Registry Cardiac Procedures Registry National Cardiac Surgery Database 1 Musculoskeletal disorders Established leadership group (Spine Society of Australia, Australian Spine Registry) Australian Orthopaedic Association National Joint Replacement Registry is a device surveillance registry Australian and New Zealand Hip Fracture Registry launched Sept 2016 Clinician support for an osteoporotic hip fracture clinical quality registry expressed through stakeholder survey Australian Orthopaedic Association. National Joint Replacement Registry 1
Trauma Established leadership group (Australian Trauma Registry - AusTQIP) Existing state clinical quality registry with incomplete patient capture Australian Trauma Registry NT Trauma Victorian State Trauma System 1 Adult critical care Established leadership group - Australian and New Zealand Intensive Care Society (ANZICS) CORE includes Adult Patient Database ANZICS CORE registries 1 High burden cancers Key agencies support the development of clinical quality registries. National registry for prostate cancer. Established leadership groups in some jurisdictions and for some specific cancer types. Australian Association of Cancer Registries Existing audit - Binational Colorectal Cancer Audit Australian Breast Device Registry (ABDR) / Breast Surgeons of Australia and New Zealand Quality Audit Prostate Cancer Outcomes Registry - Australia and New Zealand Cutaneous Lymphoma Registry under development Victorian Lung Cancer Registry 0.75 Stroke Established leadership group - Australian Stroke Clinical Registry Australian Stroke Clinical Registry Australian Thrombolysis Registry 1 Renal disease Established leadership group (Australian and New Zealand Dialysis and Transplant Registry) Australian and New Zealand Dialysis and Transplantation Registry 1
Neonatal critical care Established leadership group - ANZICS CORE includes Paediatric Intensive Care Registry Existing national registry with substantial patient capture Australian and New Zealand Intensive Care Society CORE registries 1 Mental health Clinician advocacy - identified as a high priority in stakeholder survey No existing registry 0.25 Maternity Existing jurisdiction-based data collections, no national clinical quality registries Australian Maternity Obstetric Surveillance System Maternity Care Indicators data collection 0.75 Dementia Dementia collaborative research centres is conducting a scoping project for the National Dementia Register in Australia No current registry 0.25 Major burns Established leadership group and existing national registry with incomplete patient capture (Burns Registry of Australia and New Zealand) Burns Registry of Australia and New Zealand 1 Diabetes Clinician advocacy - identified as a high priority in stakeholder survey Australian National Diabetes Audit (ANDA) is a research audit that is conducted annually No current registry 0.25
d Adult critical care Prioritisation category Outcome Short-listed by Cost, stakeholder priority Criterion1.1 Serious consequences to the patient – Evidence burden DALYs 2011 x Criterion 1.1 Serious consequences to the patient – Evidence –% of total DALYs 2011 x Criterion 1.1 Serious consequences to the patient – Score 0.75 Criterion 1.3 High cost to health system – Evidence – NHCDC hospital cost $2.4 billion Criterion 1.3 High cost to health system – Evidence – % of total cost from NCCH 7.11% Criterion 1.3 High cost to health system – Score 1 Criterion 2.2 Clinician support – Evidence – Leadership group Established leadership group - ANZICS CORE includes Adult Patient Database Criterion 2.2 Clinician support – Evidence – Current clinical quality registries Australian and New Zealand Intensive Care Society CORE registries Criterion 2.2 Clinician support – Score 1 Total score 2.75
f Stroke Prioritisation category Outcome Short-listed by Cost, BOD, stakeholder priority Criterion1.1 Serious consequences to the patient – Evidence burden DALYs 2011 136 771 Criterion 1.1 Serious consequences to the patient – Evidence –% of total DALYs 2011 3.00% Criterion 1.1 Serious consequences to the patient – Score 1 Criterion 1.3 High cost to health system – Evidence – NHCDC hospital cost $0.39 billion Criterion 1.3 High cost to health system – Evidence – % of total cost from NCCH 1.16% Criterion 1.3 High cost to health system – Score 0.5 Criterion 2.2 Clinician support – Evidence – Leadership group Established leadership group - Australian Stroke Clinical Registry Criterion 2.2 Clinician support – Evidence – Current clinical quality registries Australian Stroke Clinical Registry, Australian Thrombolysis Registry Criterion 2.2 Clinician support – Score 1 Total score 2.5
g Renal disease Prioritisation category Outcome Short-listed by Cost, stakeholder priority Criterion1.1 Serious consequences to the patient – Evidence burden DALYs 2011 56 236 Criterion 1.1 Serious consequences to the patient – Evidence –% of total DALYs 2011 1.25% Criterion 1.1 Serious consequences to the patient – Score 0.5 Criterion 1.3 High cost to health system – Evidence – NHCDC hospital cost $2.19 billion Criterion 1.3 High cost to health system – Evidence – % of total cost from NCCH 6.49% Criterion 1.3 High cost to health system – Score 1 Criterion 2.2 Clinician support – Evidence – Leadership group Established leadership group (Australian and New Zealand Dialysis and Transplant Registry) Criterion 2.2 Clinician support – Evidence – Current clinical quality registries Australian and New Zealand Dialysis and Transplantation Registry Criterion 2.2 Clinician support – Score 1 Total score 2.5
h Neonatal critical care Prioritisation category Outcome Short-listed by Cost Criterion1.1 Serious consequences to the patient – Evidence burden DALYs 2011 102 773 Criterion 1.1 Serious consequences to the patient – Evidence –% of total DALYs 2011 2.27% Criterion 1.1 Serious consequences to the patient – Score 0.75 Criterion 1.3 High cost to health system – Evidence – NHCDC hospital cost $0.43 billion Criterion 1.3 High cost to health system – Evidence – % of total cost from NCCH 1.27% Criterion 1.3 High cost to health system – Score 0.5 Criterion 2.2 Clinician support – Evidence – Leadership group Established leadership group - ANZICS CORE includes Paediatric Intensive Care Registry. Existing national registry with substantial patient capture Criterion 2.2 Clinician support – Evidence – Current clinical quality registries Australian and New Zealand Intensive Care Society CORE registries Criterion 2.2 Clinician support – Score 1 Total score 2.25
i Mental health Prioritisation category Outcome Short-listed by Cost, BOD, stakeholder priority Criterion1.1 Serious consequences to the patient – Evidence burden DALYs 2011 341 271 Criterion 1.1 Serious consequences to the patient – Evidence –% of total DALYs 2011 7.55% Criterion 1.1 Serious consequences to the patient – Score 1 Criterion 1.3 High cost to health system – Evidence – NHCDC hospital cost $1.6 billion Criterion 1.3 High cost to health system – Evidence – % of total cost from NCCH 4.74% Criterion 1.3 High cost to health system – Score 1 Criterion 2.2 Clinician support – Evidence – Leadership group Clinician advocacy - identified as a high priority in stakeholder survey Criterion 2.2 Clinician support – Evidence – Current clinical quality registries No existing registry Criterion 2.2 Clinician support – Score 0.25 Total score 2.25
No Australian registry: Internationally, there is an Austrian urogynecology vaginal mesh registry. N/a Dialysis, transplantation, organ donation Guideline: Kidney Health Australia – – chronic kidney disease, dialysis, transplantation. Registry: ANZDATA collects comprehensive data. N/a Cerebral spinal fluid shunt Registry: Pilot Australasian Shunt Registry based a Children’s Hospital Westmead. Neurosurgical Society of Australasia proposes broader development of a registry. Multiple international registries, e.g. UK shunt registry. Guidelines: Multiple jurisdictional, e.g. Insertion or revision of ventriculoperitoneal shunt. WA Health. Attachment 5: Burden of disease data for short-listed clinical domains Table A5.1: Ischaemic heart disease Conditions used in BOD Total Burden (DALY) 2011 As % of total DALY 2011 Coronary heart disease 346 651 7.71% Aortic aneurysm 15 472 0.34% Atrial fibrillation and flutter 37 526 0.83% Cardiomyopathy 23 105 0.51% Non-rheumatic valvular disease 27 531 0.61% Rheumatic heart disease 11 539 0.26% Other cardiovascular diseases 37 644 0.84% Total 499 468 11.10%
Table A6.4: High burden cancers DRG Description NHCDC 2012/13 costs ($) G02AB Major small and large bowel procedure $0.51 billion G01AB Rectal resection $0.26 billion G60AB (73%) Digestive malignancy $0.07 billion J06AB, J07AB, J14Z, J62AB Breast condition procedure, reconstruction; breast malignancy $0.31 billion R01AB, R03AB, R60AB, R61ABC Lymphoma, acute and leukaemia $0.48 billion E01AB, E71AB Respiratory cancer $0.29 billion M01AB, M60AB Prostate cancer $0.17 billion R63Z Chemotherapy $0.43 billion – Total high burden cancers $2.52 billion Table A6.5: Burns DRG Description NHCDC 2012/13 costs ($) Y01Z, Y02AB, Y03Z, Y60Z, Y61Z, Y62AB Burns $0.11 billion Table A6.6: Maternity DRG Description NHCDC 2012/13 costs ($) O60ABC Vaginal delivery $1.1 billion O01ABC Caesarean delivery $1.0 billion – Total Maternity $2.1 billion
Table A6.7: Mental health DRG Description NHCDC 2012/13 costs ($) U61AB Schizophrenia disorder $0.59 billion U63AB Major affective disorder $0.43 billion U40Z Mental health treatment with electroconvulsive therapy, sameday $0.011 billion U60Z Mental health treatment without electroconvulsive therapy, sameday $0.017 billion U62AB Paranoia and acute psychiatric disorders $0.081 billion U64Z Other affective and somatoform disorders $0.093 billion U65Z Anxiety disorders $0.042 billion U66Z Eating and disorders $0.065 billion U67Z Personality disorders and acute reactions $0.16 billion U68Z Childhood mental disorders $0.012 billion – Total mental health $1.6 billion Table A6.8: Stroke DRG Description NHCDC 2012/13 costs ($) B69AB, B70ABCD Transient ischaemic attack, stroke $0.39 billion