Cardiac Services

Latest information on the SCHN Cardiac Services

The Sydney Children’s Hospitals Network is moving forward with the recommendations from the NSW Paediatric Cardiac Services Panel.

Regular progress updates will be posted on this page.

The Board is committed to delivering a values-based, networked cardiac service. Now is the time to move forward as one team and work together to overcome past challenges, focusing on what is best for children and families of NSW. It provides SCHN with a platform to broaden the depth and breadth of care it provides to children living with heart disease and the opportunity to contribute to the collection of high quality and comprehensive clinical outcome and experience data.

SCHN Board Chair, Elizabeth Crouch. January 2021

Read Elizabeth Crouch's letter

Read Cathryn Cox's letter

Summary: Draft NSW Paediatric Cardiac Model of Care

Summary of Model of Care

Each individual child is at the centre of the model of care, with cardiac care delivered through integrated pathways provided as close to the family home as possible, from before birth until transition to adult services.

Delivery of care by a comprehensive multidisciplinary cardiac team will occur across a number of care environments including hospital and a variety of ambulatory settings such as outpatients, outreach clinics, hospital in the home, remote monitoring and telehealth and will:

  • Reflect nationally and internationally accepted clinical safety standards where surgical or endovascular interventions are being undertaken. This includes sufficient case numbers of all complexity to maintain expertise in the management of all types of congenital heart disorders.
  • Be provided in a safe environment for cardiac surgery, with appropriate infrastructure, clinical staff and support facilities such as access to urgent paediatric cardiac catheterisation, specialist imaging and post-operative support services.
  • Recognise a consultation and liaison service to support other clinical sub-specialties.
  • Exist within the framework of a network, providing comprehensive access to all paediatric sub-specialties.
  • Ensure staffing levels allow expert provision of care 24 hours per day, 7 days a week.
  • Adhere to clinical protocols and pathways of care based on best evidence and contemporary practice, consistent with the service being delivered.
  • Manage referrals through a central intake and collect patient data to measure the effectiveness and impact on patient outcomes.
  • Have a close relationship with all maternity and fetal medicine services.

Objectives of the model of care

  • Deliver child and family centred care to ensure all patients receive high-quality comprehensive and individualised care.
  • Enable timely access to the multidisciplinary team for every patient.
  • Advance delivery of ambulatory care through outreach including virtual and telehealth to support regional families and their paediatric teams.
  • Ensure consistent care pathways and protocols across all sites of paediatric cardiac care delivery (Sydney Children’s Hospitals Network, John Hunter Kids, Local Health District partners and outreach services).
  • Be a sustainable model that is not dependent on individual practitioners.
  • Promote collaboration, openness, respect and empowerment through all the clinical teams.
  • Build and grow a professional, skilled and caring workforce.
  • Undertake ongoing monitoring of clinical outcomes, provide quality assurance and have strong clinical governance.
  • Incorporate research and innovation into every stage of the inpatient and outpatient journey.
  • Be guided by robust, collaborative leadership that drives development, innovation and progress in the Cardiac Service.

 

Summary: Model of Care Panel Recommendations

The NSW Paediatric Cardiac Services Panel endorsed the model of care and agreed robust data collection and analysis is required to inform the ongoing development of paediatric cardiac services.
The independent Panel chair, Professor Villis Marshall AC, applied the findings outlined in the RACS report (insert hyperlink) to develop recommendations for the Panel’s consideration at its final meeting on January 20, 2021.

The Panel unanimously agreed to the following recommendations:

  1. The paediatric cardiac surgery service delivered by the Sydney Children’s Hospitals Network (SCHN) is a state-wide service providing care for the children of NSW. The service should work closely with the John Hunter Children's Hospital and local health districts across the state to establish comprehensive referral networks that ensure timely equitable access for all children in NSW.
  2. The state-wide service should operate as a single service across the two SCHN sites with a commitment from the SCHN to continue to strengthen existing teams and to build cross-site collaboration through a focus on the multidisciplinary team.
  3. The SCHN should continue to work closely with patients, parents, carers and families from across NSW to ensure the service is meeting their individual needs. The care provided should be a seamless experience for families regardless of which site they are receiving care. Similarly, for families being referred to SCHN from John Hunter Children’s Hospital or other local health districts their experience should feel like a continuation of their care journey.
  4. Monitoring and evaluation of the SCHN service will be essential to ensure the service is achieving the best outcomes for patients, their families and carers. To do this the SCHN should commit to collecting a standardised minimum data set which will include patient-reported and parent-reported outcomes and experience.
  5. On the SCHN Board’s acceptance of these recommendations, the SCHN will provide the NSW Ministry of Health with a proposal by 31 March 2021 for how they will use the $10 million already announced by the Government to support implementation. This funding ‘of up to $10 million for equipment and infrastructure to ensure specialists are further assisted in delivering paediatric cardiac services’ was announcement by Minister Hazzard in January 2020.

There was no Panel consensus for the following recommendation. The Panel agreed this would be provided to the Board for consideration and decision.

6. Appropriate patient selection will be essential to provide the best and safest care for children.

  • For the highest complexity cases (assessed by complexity/STAT scores), the low numbers in NSW would not support operation at two sites.
  • Where procedures are of medium complexity, these could be safely conducted across two sites informed by a multidisciplinary team meeting (including the Divisional Network Director and clinical team members from both sites). This meeting would consider which site is best placed to manage each case based on various factors including, appropriate patient selection (e.g. age, comorbidities, previous history) and availability of resources (e.g. operating theatre, intensive care unit (ICU), specialist cardiac or allied health staffing).
  • Lower complexity cases should be conducted at both sites but with a decision made based on the best care for the patient (based on treatment in an appropriate timeline)

As agreed by the Panel, Professor Marshall reflected the Panel's discussion when he presented the recommendations to the Board in late January, including feedback regarding the data and literature review, consideration of resourcing impacts, equivalence of outcomes and the level of investment required.

Following detailed discussions and consideration of the RACS material and briefing from Professor Marshall, the six recommendations were endorsed by the Board, with the Executive to work with the cardiac services team to operationalise the model of care.

Read the RACS Recommendations

 

Summary: Royal Australasian College of Surgeons data and literature review

The Royal Australasian College of Surgeons (RACS) reviewed information relating to paediatric cardiac surgery recently published in Australia and internationally. Additionally, verification of a previous analysis of Sydney Children’s Hospitals Network (SCHN) data was conducted, along with further analyses of both the raw data provided and on several other NSW datasets from other sources.

Two additional pieces of work included a case study of paediatric cardiac services in Montreal and an analysis of current data in the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database (CHSD).

The material included in the RACS report was reviewed by internal expert clinicians as well as external paediatric cardiac specialists (surgery/cardiology).

Recommendations

Data collection

There needs to be appropriate data collection processes established in the form of a registry collecting outcomes, and with a view to enable quality improvement by providing prompt feedback to participants. It is critical to collect data prospectively and ensure a minimum dataset is collected.

This should be reviewed annually to detect any emerging trends. However, it is not just clinical outcomes that are important but also patient/parent satisfaction.


Quality and Safety

The recommended volume of cases at both the institution and surgeon level have been reported in the literature to impact outcomes of paediatric cardiac surgery. From the international literature, the consensus is that high-volume centres appear to have superior performance compared to lower volume centres. This is more strongly noted for the most complex surgery.

It is, however, not a straightforward relationship. Hospital characteristics have been shown to be strongly associated with better outcomes, which is intimately related to hospital-level resources. There needs to be a careful determination of what is required for different complexity cases.

Patient selection is a key to providing the best and safest care. Availability of appropriate hospital resources will determine the location of treatment for patients of varying levels of complexity. In a one service two-site model managed by the SCHN, consideration needs to be given to the most appropriately resourced location for the most complex of surgeries.


Operational

A model of care is critical to guide the SCHN, with consistent guidelines for the service delivery model. Waitlist management is a key component of the model of care.

The service delivery model should include consideration of interventional cardiology, which is intimately related to this service. Due to the broad reach of paediatric cardiac services, other clinical areas need engagement including fetal medicine services.

Infants need to be at the appropriate site for treatment, and in certain cases, this could be facilitated by coordinated extracorporeal membrane oxygenation (ECMO) advisory service.

Summary: RACS Recommendations

The RACS Report, Paediatric Cardiac Service – A review commissioned by NSW Health December 2020 put forward the following 18 recommendations to the NSW Paediatric Cardiac Services Model of Care Panel:

  1. Data collection and data definitions should be standardised between all centres, and data should be collected at the procedure level.
  2. There should be an independent audit of data to provide a quality assurance validation process to ensure that submitted data quality is of a high standard, being both accurate, pertinent, as well as ensuring all eligible patients are captured.
  3. Data collection should ensure that patient details are fully recorded and that patient selection criteria is clear and transparent.
  4. Additionally, all cases should be documented about whether or not they had surgery during that admission or if their case was delayed for any reason. Data needs to be collected on all aspects relating to a delay, whether it be in decision-making, transfer or treatment.
  5. Economic sustainability needs to be looked at, as factors other than volume, such as length of stay and cost, should also be considered in the performance of services. The data collection needs to include items that can be used for such evaluations and for monitoring purposes.
  6. Patient data should be collected so that the effectiveness of the service can be measured and the impact this has on patient outcomes understood. Additionally, patient/parent experience should be collected through surveys or other mechanisms.
  7. Results of genetic testing should be included in data collected to improve understanding of their relevance and impact on preoperative and postoperative care.
  8. For the highest complexity cases (assessed by complexity/STAT scores), the low numbers in NSW would not support operation at two sites.
  9. Where procedures are of medium complexity, these could be safely conducted across two sites informed by a multidisciplinary team meeting (including the Divisional Network Director and clinical team members from both sites). This meeting would consider which site is best placed to manage each case based on various factors including, appropriate patient selection (e.g. age, comorbidities, previous history) and availability of resources (e.g. operating theatre, intensive care unit (ICU), specialist cardiac or allied health staffing).
  10. Lower complexity cases should be conducted at both sites but with a decision made based on the best care for the patient (based on treatment in an appropriate timeline).
  11. Surgeons who provide 24/7 emergency cover require appropriate rosters. The Royal Australasian College of Surgeons (RACS) and National Health Service (NHS) England have recommended roster frequencies. To support the number of cases with the required 24/7 roster, an appropriately skilled team of surgeons is required to treat congenital paediatric cardiac cases. The NHS England recommends that a team of at least 4 surgeons doing at least 125 congenital or paediatric cardiac cases annually (paediatric and adult) is required. Consideration should also be given regarding the support required for children to transition to the adult service.
  12. The SCHN needs to finalise and implement a model of care, including consistent and shared guidelines and pathways, as well as shared patient selection criteria.
  13. There should be one service delivery model, which is provided across the two sites including a coordinated and collaborative approach to waitlist management, joint multidisciplinary meetings pre-and post-surgery with both sites supporting each other, shared rosters (see following recommendation 14 below). Robust data collection and monitoring are essential.
  14. Staff need to be appropriately trained/experienced medical and nursing staff. Rostering across the network for 24/7 cover will take into account staff sustainability, including paediatric surgery and interventional cardiology cover.
  15. Adequate support for cardiology interventions will be required to account for the predicted increase over the next decade for interventional treatment of atrial and ventricular septal defect closure and patent ductus arteriosus occlusion.
  16. Strong collaborative relationships with fetal maternal medicine services are necessary to ensure seamless care for newborns and their families and to ensure that the service can be responsive to innovations in prenatal cardiac diagnosis. This could be achieved through regular multidisciplinary care planning and case review through Mortality and Morbidity meetings.
  17. If a transfer of an infant is required, processes must be in place to facilitate timely transfer once the decision to transfer is made.
  18. An ECMO advisory service should be established with appropriate governance to allow early identification of patients who require ECMO, so that they are transferred at the earliest possible time. This service should have a single contact point to co-ordinate the required resources and manage the required 24/7 availability.