Annual ReportHIGHLIGHTS OF 2015–16

OUR MESSAGEOn behalf of the Paediatric Integrated Cancer Service (PICS) we are pleased to present our 2015–16 annual report, the � nal report as part of the 2013–16 strategic plan. From a statewide perspective, we have continued to strengthen cancer service provision and coordination across the state with ongoing work within the Regional Outreach and Shared Care Program, in particular access to telehealth, facilitation of a statewide approach to multidisciplinary tumour-speci� c meetings and continued development of the optimal care pathway for children and adolescents with an acute leukaemia diagnosis in Victoria. Within the Long Term Follow-up Program our focus has been to continue streamlining the risk-adapted approach to clinic service provision while focusing on the supported transition of adolescents and young adults to adult and community services. We have also completed the � rst range of nationally accessible eLearning education modules for the paediatric oncology community.

During the second half of the 2015–16 year we have looked to the future, with the development of our 2016–19 strategic plan. This plan will position us strongly to drive service improvement for Victorian paediatric cancer services through collaboration, innovation, quality and research. Our work is dependent on the relationships with the paediatric oncology community, and we look forward to strengthening our partnerships through working together on common aims and objectives.

We would like to take this opportunity to present highlights of our year as well as an overview of our new strategic direction. We thank all those involved in our work and look forward to the year ahead.

Jane Williamson Professor Yves HelouryPICS Program Manager PICS Medical Director

WHO WE AREThe PICS is funded by the Victorian Government to lead a networked paediatric cancer care system for Victoria. We bring together quaternary, tertiary, regional and primary care services to deliver coordinated, high-quality, family-centred care to Victorians. We work collaboratively with the two primary diagnostic and treatment centres at the Royal Children’s Hospital and Monash Children’s Hospital, the statewide paediatric radiation therapy service at Peter MacCallum Cancer Centre and regional shared care centres. Reporting to the Victorian Government, our leadership team consists of the PICS Governance Executive Committee and the PICS Clinical Advisory Committee. We aim to strengthen Victorian paediatric cancer care, working with the paediatric cancer community to facilitate coordinated services that are consistent, evidence-based and family-centred.

OUR NEW LOGO AND COMMUNICATION STRATEGYOur logo has served us well over the years; however, it is now time to evolve in keeping with our growth as an organisation. Our new design demonstrates visual change without losing our fundamental role as a leader in the Victorian statewide paediatric cancer community. We are proud to launch our new logo as part of this annual report.

As part of our ongoing commitment to sharing the work we do, we regularly review the way we communicate with our stakeholders. To meet the changing landscape of online communication, including the popularity of social media, we are currently redeveloping our website to enhance content and functionality and are readying ourselves to connect via social media. We look forward to launching our new website and social media presence later this year.

OUR STRATEGIC DIRECTION 2016–19The PICS has recently developed our next three-year strategic plan, which will guide activities until June 2019. The development of this plan involved extensive consultation with our partner health services, as well as the Department of Health and Human Services and other relevant stakeholder groups and organisations.

With an emphasis on collaboration, innovation, quality and research, this plan positions us to contribute to improved cure, improved experience and survivorship and better care for children and adolescents with cancer. Our strategic direction promotes a connected cancer care system through partnerships and linkages. The actions identified through extensive consultation will drive innovation and quality improvement within an accessible, family-centred service system. With an emphasis on the use of data and best available evidence to set statewide standards of care, and to support access to innovative treatment options, we will integrate innovation, quality and research into practice. The plan allows us to be responsive to the needs of our stakeholders and consumers and aims to support a cohesive and confident paediatric cancer workforce.

The PICS has adopted the Victorian Government Department of Health and Human Services vision, mission and strategic goals for the Victorian ICS.

VISION

Improving patient experiences and outcomes by connecting cancer care and driving best practice.

MISSION

The ICS will achieve the vision by:

• understanding the needs of people affected by cancer • building and supporting collaboration between health professionals,

health services and consumers • driving quality improvement in cancer care • supporting development of the cancer workforce • facilitating system-wide engagement in cancer research.

STRATEGIC GOALS

Goal 1 A networked cancer care system

Goal 2 High-quality cancer care

Goal 3 A research-informed cancer care system

Key projects in the first year of this strategic plan are highlighted in the ‘Priorities for 2016–17’ section of this annual report. For a copy of the strategic plan visit www.pics.org.au

CHILDHOOD CANCER IN VICTORIAIn 2014 the Victorian Cancer Registry recorded 190 children aged 0–14 years and 82 adolescents aged 15–19 years diagnosed with cancer in Victoria (total 272). The figures below illustrate the percentage breakdowns for new diagnoses by age and Integrated Cancer Service (ICS) region of residence at diagnosis.

Figure 1: Cancer incidence in Victorian children and adolescents aged 0–19 years, by age group, 2014

Figure 2: Victorian cancer incidence by ICS region of residence at diagnosis, 2014

Source: Victorian Cancer Registry

5–9 years 17%

0–4 years 34%

15–19 years 30%

10–14 years 19%

Gippsland 7%

Grampians 4%

Hume 8%

Loddon-Mallee 4%

Barwon 5%

Metro ICS 72%

PRIORITIES FOR 2016–17Optimal care pathway for children and adolescents with an acute leukaemia diagnosisThe PICS has begun documenting an optimal care pathway for children and adolescents diagnosed with acute leukaemia. The optimal care pathway is intended to guide the delivery of consistent, high-quality, evidence-based care for children and adolescents with acute leukaemia. The pathway aligns with key service improvement priorities including providing access to coordinated multidisciplinary care and reducing unwanted variation in practice. In 2016–17 the PICS will complete documentation of the pathway and will undertake a variation analysis of care delivered against target time frames and delivery points. The optimal care pathway will be used as a tool to identify improvement opportunities in current cancer services and to inform a range of quality improvement initiatives.

Multidisciplinary meetings with a statewide remitThe PICS has begun, and will continue to implement, a statewide approach to multidisciplinary diagnosis, treatment planning and review meetings. Multidisciplinary meetings provide a platform for relevant medical, nursing and allied health specialities to discuss and review treatment options and to agree to the treatment plan for each patient. In addition, multidisciplinary meetings provide valuable teaching and education opportunities. The meetings require reliable electronic access, with high-quality imaging screens and audio that permits uninterrupted dialogue between experts who may be contributing to the discussions from remote locations. The PICS is working with health services to support the infrastructure and processes required to facilitate multidisciplinary meetings that have a statewide remit.

Clinical trialsWorking in partnership with paediatric oncology medical, research and clinical trials stakeholders, the PICS will establish a statewide leadership group that will develop strategies to facilitate increased clinical trial enrolments and consistent reporting of activities.

Localised and home-based care In recent years, delivery of paediatric cancer treatment has expanded to the outpatient setting. Work will continue to expand care and treatments available locally, either as part of formalised shared care with other health services or in the home. The PICS will review the best available evidence to identify opportunities to expand care outside the primary treating centres, and will lead projects that will support the delivery of safe and appropriate care closer to home.

Statewide paediatric oncology nursing education framework In collaboration with health service stakeholders, the PICS will document an education framework for nurses caring for children with cancer. This framework will include education opportunities for intermediate and advanced practice nurses and will support a consistent approach to ongoing education for these nurses across Victoria.

REGIONAL OUTREACH AND SHARED CARE PROGRAMIn the past 12 months the PICS Regional Outreach and Shared Care Program (ROSCP) has worked with Goulburn Valley Health and Bendigo Health to expand the scope of practice to include low-complexity chemotherapy. Eighteen regional nurses from three health services attended fit-for-purpose chemotherapy training. Seventy separate administrations of chemotherapy have been facilitated close to home as a direct result of this work. This achievement is a significant step for regional patients and their families, with five regional centres now delivering low-complexity chemotherapy.

The ROSCP has worked collaboratively with the Royal Children’s Hospital to establish and expand opportunities for regional patients to access telehealth. The ROSCP has supported the health service to coordinate the delivery of dedicated telehealth clinics with patients across Victoria, bringing together the family, oncologist and paediatrician or general practitioner. As well as dedicated telehealth clinics, opportunistic telehealth encounters occur outside of clinic times. In 2015–16, 146 patients had appointments with their medical oncologist by telehealth. The ROSCP also continues to coordinate the delivery of 17 regional paediatric oncology clinics, held at six regional Victorian sites.

Other regional education activities coordinated and delivered by the PICS included:

• 70 paediatric medical and nursing staff attended oncology education sessions held over nine regional centres • 78 paediatricians and senior nursing staff attended six regionally hosted medical information evenings • 22 nurses and allied health staff attended paediatric oncology foundation study days • six regional paediatric nurses attended the two-day advanced oncology nursing course held in Melbourne • 70 regional nurses regularly access an electronic journal club hosted by the PICS.

This past year has also seen an expansion of paediatric oncology training to medical and nursing staff in regional outreach emergency departments. In total, 226 emergency nurses and doctors attended paediatric oncology emergency training covering febrile neutropenia pathways in six regional hospitals.

ELEARNING FOR HEALTH PROFESSIONALSTogether with eviQ and staff from the Royal Children’s Hospital and Monash Children’s Hospital, the PICS has developed a range of freely available eLearning modules for the paediatric oncology community. These modules are accessible via https://education.eviq.org.au. The PICS plans to develop a further seven modules in 2016–17. Completed modules include:

• Fever and suspected or confirmed neutropenia in children with cancer • Managing a child with chemotherapy-induced nausea and vomiting • Caring for a child with leukaemia • Procedural pain is everyone’s responsibility • Procedural pain: being prepared • Physical activity for children living with cancer.

LONG TERM FOLLOW-UP PROGRAM: TRANSITIONING ADOLESCENTS AND YOUNG ADULTSThe Long Term Follow-up Program (LTFP) continues to be administered and coordinated by the PICS, providing risk-stratified follow-up care to survivors of childhood cancer. A key priority of this program is to provide a supported transition from the paediatric health service environment to adult and community services as patients finish their schooling. The transition clinics encourage self-management of care and engage adolescents and young adults during transition. In September 2015 the LTFP received a Victorian Department of Health and Human Services grant to enable a focus on transitioning 170 eligible adolescents requiring transition by 30 March 2017. At 30 June 2016, 184 appointments have been utilised to transfer 135 of the patients, with a further 35 appointments planned for the remaining patients. An additional 144 patients have since turned 17 years of age, 31 of whom have been transferred, with the remaining 113 forecast for transition in 2016–17.

The success of a coordinated and supported transition process relies on established relationships and linkages with adult and community services. The collaborative approach to survivorship transition continues with the Royal Melbourne Hospital, Peter MacCallum Cancer Centre and the Alfred. In addition, the LTFP has actively engaged with all six Victorian Primary Health Networks and has provided late-effects education to general practitioners and allied health professionals.

HIGHLIGHTS FROM 2016–17

NURSING CHILDREN WITH CANCER FELLOWSHIPThe PICS Nursing Children with Cancer Fellowship is a 12-week program based in the Children’s Cancer Centres at the Royal Children’s Hospital and Monash Children’s Hospital, as well as a placement at the paediatric radiation therapy service at Peter MacCallum Cancer Centre and the ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service. Funded by the PICS, this program provides an opportunity to increase the breadth of knowledge and understanding of paediatric oncology care through a variety of workplace experiences and placements in specialty clinical environments. In early 2016 the PICS held a recruitment round, with four general paediatric nurses accepted for the program, beginning in August 2016.

2016 PARENT AND FAMILY INFORMATION DAYFor the second year, the PICS facilitated an information day for parents and families who have a child with cancer. Held on International Children’s Cancer Day (15 February), the event provided families with the opportunity to hear from a range of clinical experts and parents and to link with community support groups. The program included sessions directed towards families with a new diagnosis, as well as families further along the treatment pathway. We would like to thank the Royal Children’s Hospital Children’s Cancer Centre and the Parent Advisory Group, the many health professionals who volunteered their time to attend and speak, as well as the adolescents and parents who volunteered. Thank you also to both Camp Quality and My Room for sponsoring the catering.

HIGHLY COMMENDED: 2015 VICTORIAN PUBLIC HEALTHCARE AWARDThroughout 2015–16 the PICS worked with the Royal Children’s Hospital and Monash Children’s Hospital infectious diseases departments, emergency departments and the Children’s Cancer Centres, as well as regional partners, to review the time to first antibiotic for children with suspected fever and neutropenia. The ‘Target 60 minutes’ project aimed to improve clinical management and reduce potential risk to children and adolescents with suspected fever and neutropenia by reviewing, documenting and implementing a more streamlined care pathway. Initial audits indicated that the majority of children were receiving their first dose of antibiotics outside the best practice of less than 60 minutes. The initiative developed a statewide paediatric clinical practice guideline, a national paediatric eLearning module and statewide family-held risk alert cards. For children and adolescents with cancer, this work has helped to reduce time to access vital treatment, as well as reducing length of stay in the emergency department.

The PICS submitted this project, titled ‘Target 60 minutes: Improving the delivery of emergency care to children with cancer and febrile neutropenia across Victoria’ to the 2015 Victorian Public Healthcare Awards. We are proud to have been awarded highly commended in the ‘Excellence in Cancer Care’ category.

ENGAGING WITH OUR STAKEHOLDERS AND THE VICTORIA HEALTHCARE SECTOR The PICS is a committee member with formal appointments to the following health service and statewide committees and groups:

Ongoing • Statewide Adolescent & Young Adult Cancer

Advisory Committee • Peter MacCallum Cancer Centre Paediatric Cancer

Service Committee • VICS Cancer Performance Monitoring

Framework Committee • Victorian Cancer Survivorship Program Phase 11

Advisory Group

Project-specific • VCCC 3rd and 4th Psycho-oncology Research

Conference Organising Committee • VCCC Survivorship Conference 2016

Organising Committee • Victorian Lung Cancer Service Redesign Project

Grant Committee • Member of the selection panel for the Bendigo

Health Care Group ‘Provision of a Loddon Mallee Region Cancer Services Plan’

• Project Governance Committee for the ONTrac at Peter Mac online education for nurses working with AYA cancer population’s project

JOURNAL PUBLICATIONS WITH PICS AFFILIATIONS Haeusler GM, Phillips RS, Lehrnbecher T, Thursky KA, Sung L, Ammann RA (2015). Core outcomes and definitions for pediatric fever and neutropenia research: a consensus statement from an international panel. Pediatr Blood Cancer, 62(3):483–9.

Haeusler GM, Sung L, Ammann RA, Phillips B (2015). Management of fever and neutropenia in paediatric cancer patients: room for improvement? Curr Opin Infect Dis, 28(6):532–8.

Phillips RS, Sung L, Amman RA, Riley RD, Castagnola E, Haeusler GM, Klaassen R, Tissing WJ, Lehrnbecher T, Chisholm J, Hakim H, Ranasinghe N, Paesmans M, Hann IM, Stewart LA; PICNICC Collaboration (2016). Predicting microbiologically defined infection in febrile neutropenic episodes in children: global individual participant data multivariable meta-analysis. Br J Cancer, 15;114(6):623–30.

PICS and Long Term Follow-up Program (LTFP) revenue and expenses consolidated

REVENUE

Integrated Cancer Services Victorian Government grant

$ 1,236,301.00

LTFP Victoria’s Cancer Action Plan grant $ 562,929.44

Long Term Follow-up Transition grant $ 56,786.12

Revenue total $ 1,856,016.56

EXPENDITURE

PICS expenses $ 1,218,565.00

LTFP expenses $ 585,605.26

Expenditure total $ 1,804,170.26

PICS Surplus/(Deficit) $ 17,736.00

LTFP Surplus/(Deficit) $ 34,110.30

Expenses – PICS and Long Term Follow-up Program (LTFP) consolidated

GENERAL EXPENSES

General expenses (including printing, stationery, office supplies and editing)

$ 41,559.06

Telephone and computer $ 4,270.00

Website review and maintenance $ 5,191.00

Motor vehicle $ 1,297.00

eLearning: procedural pain project $ 5,000.00

Grant round funding $ 83,439.01

Multidisciplinary meeting room support package $ 100,000.00

Patient information brochures and booklets $ 9,418.00

Regional education, staff training and travel $ 42,493.84

Special functions $ 9,657.92

Nursing Children with Cancer Fellowship $ 46,790.07

Strategic planning consultation $ 8,600.00

SALARY EXPENSES

PICS secretariat/project salaries $ 864,473.00

Clinical salaries: LTFP $ 581,981.36

FINANCIAL SUMMARY 2015–16

Paediatric Integrated Cancer ServiceAdministrative Host: The Royal Children’s HospitalMailbox 70, 50 Flemington RoadParkville, VIC 3052P: 03 9345 4433 F: 03 9345 9165E: paediatric.ics@rch.org.auwww.pics.org.au

THANK YOUWe would like to thank the health service sta� and consumers who partner with us in our work. We acknowledge the Victorian Government for its ongoing support and the Sporting Chance Cancer Foundation for the � nancial support of the Regional Outreach and Shared Care Nurse Educator and Nurse Coordinator.

We would also like to thank all those involved in the PICS work this year, including the preparation of this year’s annual report. We would particularly like to recognise and thank the children whose photos have featured in this report.

For more information visit www.pics.org.au

The Paediatric Integrated Cancer Service is supported by the Victorian Government