Cancer and Palliative Care Research and Evaluation Unit ......Poster at COSA 2010 Progress reports...

Cancer and Palliative

Care Research and

Evaluation Unit (CaPCREU)

Annual report

June 2012

The Cancer and Palliative Care Research and Evaluation Unit (CaPCREU) is a collaboration between Curtin University, Edith Cowan University

and The University of Western Australia, and was established with funding from the Western Australian Government through the WA Cancer and Palliative Care Network.

Prepared by:

Claire Johnson Angela Ives Christobel Saunders

Date: June 2012

Cancer and Palliative Care Research and Evaluation Unit (CaPCREU) School of Surgery M507 The University of Western Australia 35 Stirling Hwy Crawley WA 6009 Ph: +61 8 9346 1431 Fax: +61 8 9346 2416

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CONTENTS

ABBREVIATIONS ..........................................................................2

1. EXECUTIVE SUMMARY ............................................................3

2. INTRODUCTION ........................................................................5

3. PROJECT WORK PLAN ............................................................5

4. ACTIVITY SUMMARY ................................................................6

4.1 Evaluation activities ...................................................................6

4.2 Research....................................................................................8

4.3 Service delivery & quality improvement ..................................13

4.4 Research support ....................................................................15

4.5 Collaboration & community engagement ................................16

4.6 Dissemination of research findings .........................................17

4.7 Research funding.....................................................................19

5. ADMINISTRATION ...................................................................20

5.1 Personnel .................................................................................20

5.2 Professional development .......................................................20

5.3 Executive management ...........................................................21

APPENDIX 1 ................................................................................22

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ABBREVIATIONS

AYAs Adolescents and Young Adults

CaPCREU Cancer and Palliative Care Research Evaluation Unit

CCC Comprehensive Cancer Centre

COSA Clinical Oncology Society of Australia

CU Curtin University

DOHA Australian Government Department of Health and Ageing

DoHWA Department of Health WA

ECU Edith Cowan University

ED Emergency Department

EOI Expression of Interest

EOL End of Life

GPs General Practitioners

HREC Human Research Ethics Committee

LCP Liverpool Care Pathway

MDT Multidisciplinary Team

MMEx Medical Message Exchange Service

OHCWA Oral Health Centre of Western Australia

ORN Osteo-radio-necrosis

PC Palliative Care

PCOC Palliative Care Outcomes Collaborative

QI Quality Improvement

QIF Quality Improvement Facilitator

RPH Royal Perth Hospital

SCGH Sir Charles Gairdner Hospital WA

UWA The University of Western Australia

WACPCN Western Australian Cancer and Palliative Care Network

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1. EXECUTIVE SUMMARY

Under the Service Agreement with the Government of Western Australia Department of Health (DoHWA), the Cancer and Palliative Care Research and Evaluation Unit (CaPCREU) is required to provide regular reports to the Western Australian Cancer and Palliative Care Network (WACPCN). The purpose of this report is to provide an overview of the activities undertaken by CaPCREU in the twelve months to 30 June 2012 for the WACPCN and other key stakeholders.

In accordance with the conditions of a new Service Agreement with the DoHWA, signed in June 2011, CaPCREU has developed a new Work Plan to guide the Unit’s priorities for the next two years. The Work Plan identifies five key objectives which include research, evaluation and quality improvement activities to improve outcomes for people diagnosed with cancer and increased capacity for health professionals to conduct health services research. In this Work Plan, CaPCREU also identifies the need to develop a strong corporate identity and to identify the resources required for sustainability.

During the reporting period, the CaPCREU team has been actively working on two evaluation projects for the WACPCN. These are an evaluation of the Tumour Collaboratives and an evaluation of palliative care in secondary metropolitan hospitals, residential aged care facilities and prisons. A third project, an evaluation of the MMEx Cancer Module, is waiting for the implementation of MMEx within the cancer services prior to commencing the data analysis component of the evaluation. CaPCREU has also conducted an internal evaluation of the Small Grant and Clinical Trials Schemes which are administered by the Unit. Several changes were recommended and implemented for the current round of the Small Grant Scheme and negotiations are ongoing about the future direction of the Clinical Trials Scheme.

Research remains the focus of CaPCREU’s activities, with the team actively working on eleven projects which range from a validation study of assessment tools used in palliative care to projects investigating better ways to provide services such as the colonoscopy prioritisation project and peer review of multidisciplinary team meetings as a mechanism for quality improvement. Projects have been developed in collaboration with health service managers and providers and reflect their priorities and need for evidence. The Unit has also been actively disseminating findings from their work. Team members have co-authored three papers published in peer reviewed journals during the reporting period with a further two under editorial review. Five papers were presented at relevant conferences which included two oral presentations and two posters at COSA in November 2012. Numerous scientific papers are currently in preparation and several have been submitted for upcoming conferences.

Further to research activities, CaPCREU has increasingly become involved in up-skilling of health professionals, both in the clinical and research fields. Through the Palliative Care Outcomes Collaborative (PCOC), CaPCREU has worked with the WACPCN to develop a palliative care quality improvement program which is to be rolled out throughout the WA Country Health Service during the next twelve months. CaPCREU has also commenced presenting a series of Cancer Health Services Research Workshops with the aim of increasing the research skills and confidence of health professionals with limited research

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experience. A workshop about preparing a simple grant application received positive feedback and resulted in a significant increase in the number of applications for the 2012 round of the CaPCREU Small Grant Scheme. A workshop about research ethics was well received and future workshops are planned to address areas such as project management, data analysis and dissemination of results.

CaPCREU has again seen some movement of team members during the reporting period with the resignation of a research officer, a senior research officer and administrative officer. All positions have been filled with highly skilled and motivated staff; this takes our team to 1.8 FTE research fellows and 4.0 FTE professional staff.

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2. INTRODUCTION

The Cancer and Palliative Care Research and Evaluation Unit (CaPCREU) was established with seed funding from the Government of Western Australia Department of Health (DoHWA) through the Western Australian Cancer and Palliative Care Network (WACPCN) in October 2008. While administered and governed through the School of Surgery at The University of Western Australia, the CaPCREU is a collaboration between Edith Cowan University, Curtin University and The University of Western Australia. As part of the Service Agreement with the DoHWA, the CaPCREU is required to provide regular reports to the WACPCN and other key stakeholders. The purpose of this report is to provide WACPCN with an overview of the activities undertaken by the CaPCREU in the twelve months to 30 June 2012.

3. PROJECT WORK PLAN

Since its inception more than three years ago, the CaPCREU has continued to address the objectives set out in the initial Work Plan which was released in March 2009. On signing a new contract with the DoHWA in June 2011, the Work Plan was reviewed and refined to better reflect progress made by the Unit and its current priorities (see Appendix 1). The Work Plan covers the two years of the recent contract and seeks to address five key objectives:

• Evaluate the impact of the WACPCN on cancer and palliative care outcomes in Western Australia.

• Facilitate an increase in the capacity for cancer and palliative care health services research in WA.

• Encourage and support health care providers to translate research findings into policy and practice.

• Maintain a clear corporate identity for the ethical conduct of, and support for, health services research in WA.

• Ensure the sustainability of the CaPCREU.

These goals are very similar to those of the original Work Plan and reflect the breadth of activities undertaken by the CaPCREU. The Unit has taken on a number of project evaluations and has increased support for the WACPCN and health professionals with quality improvement activities. This has involved supporting groups to use evaluation as a quality improvement tool as well as being actively involved in promoting quality improvement in clinical practice. We have also evaluated several of our own programs with the aim of using feedback to improve the way we deliver those programs in the future.

The CaPCREU plans to continue to support health professionals who wish to undertake research. In the current Work Plan, support may involve the CaPCREU personnel becoming part of a research team, providing advice on particular projects or aspects of research, mentoring researchers, providing introductions to other potential collaborators and by providing workshops for novice researchers to acquire new skills. The CaPCREU also

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assists clinical personnel by making available and administering two streams of research funding: the Small Grant Scheme and the Clinical Trials Scheme.

In the current Work Plan, the CaPCREU has identified the need for future planning and will more clearly identify and articulate the financial needs of the Unit to function and grow in the future.

4. ACTIVITY SUMMARY

4.1 EVALUATION ACTIVITIES

The CaPCREU aims to assist in evaluating how the WACPCN has impacted on cancer and palliative care outcomes in WA. The Unit contributes by directly undertaking evaluation of WACPCN activities and programs and by advice and support to the WACPCN to ensure that appropriate methods for evaluation are incorporated into the planning phase of new projects. Following is a report on the progress of the evaluation projects in which CaPCREU has a lead role or to which we make a significant contribution. We have also evaluated several of our own programs with the aim of using feedback to improve the way we deliver similar programs in the future.

An evaluation of the Tumour Collaboratives

Phase I of the evaluation of the Tumour Collaboratives was completed in September 2009. Phase II of the evaluation is currently in progress. An online survey of health professionals has been completed and semi-structured interviews are currently being conducted.

Status: Data collection underway

Funding: CaPCREU funded

Outputs: Interim report submitted 2009

Final report in preparation

Scientific paper in preparation

An evaluation of MMEx Cancer Module (Medical Message Exchange

Service)

The CaPCREU collaborated with the WACPCN to submit a successful tender to Cancer Australia to evaluate the use of MMEx as a way to collect clinical cancer data in WA, and potentially in Australia. The main aim of the proposal is to evaluate the ease of use, completeness and accuracy of the cancer module within the MMEx system in collecting cancer stage, treatment and outcomes data to enhance existing population-based cancer data in WA. Due to delays in the roll-out of the cancer module, the evaluation component of the project has also been delayed. A project officer to support the implementation of the cancer module has been employed by the WACPCN. The CaPCREU has prepared and submitted variations to the original contract to accommodate the delays. The project will run until May 2013.

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Status: Ethics approvals received from DoHWA for data access and linkage and from UWA for the MMEx user evaluation questionnaire.

Funding: Cancer Australia

Outputs: Oral presentation at State Cancer Conference 2011

Poster at COSA 2010

Progress reports submitted to Cancer Australia (latest March 2012)


An evaluation of the Metropolitan Area Health Palliative Care Service

In the latter half of 2010 and early 2011, the WACPCN launched the two Palliative Care Metropolitan Area Health Teams (one each in the North and South Metropolitan Area Health Services). The project was initiated to provide palliative care consultative support to help address the gaps in palliative care provision in the metropolitan area, particularly in secondary hospitals, residential aged care facilities and prisons. The CaPCREU was approached by the WACPCN to undertake a comprehensive evaluation of the new services, initially conducting a baseline evaluation of palliative care provision in target facilities.

Status: Data collection ongoing

Funding: Western Australian Cancer and Palliative Care Network

Outputs: Preliminary baseline report submitted January 2012


Evaluation of the Small Grant Scheme

Following steering group discussion about future research funding ideas for the CaPCREU, a comprehensive review of the Small Grant Scheme was undertaken to establish the benefits of the funding scheme to clinical research in WA. The problems which have been identified with the scheme include:

• Delays in the commencement of funded research projects because ethics approval had not been sought.

• Health professionals working in the public health system having difficulty in retaining funds across financial years.

• Health professionals’ limited time and experience with applying for grants.

• Limited collaboration and networking between health professionals and academics to support good health services research.

• Many health professionals lacked the experience or networks to develop and undertake health services research or evaluation projects, but had good ideas which could be translated into practice and would improve patient care.

In response to the review, the CaPCREU expanded the $20,000 Small Grant Scheme by providing an additional $10,000 “in-kind” support via an academic group. The CaPCREU supported health professionals to apply for this grant scheme through workshops, links to academics and “in-kind” support to academic institutions as part of the scheme. Where required, the CaPCREU will subcontract a statistician and/or a health economist to support researchers with limited skills and access to academic support.

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Status: Small Grant Scheme to continue

Funding (of evaluation): CaPCREU funded

Outputs: Discussion paper

Evaluation of the Clinical Trials Scheme

A comprehensive review of the first and subsequent two rounds of the Clinical Trials Scheme was undertaken to establish the benefits of funding clinical research in WA. While funding recipients found the scheme beneficial, a number of problems and concerns were identified. Shortcomings included low rate of patient accrual and follow-up for funded trials, and poor reporting of verifiable outputs. To advise future clinical trials funding programs, a review of clinical trials programs in Australia was undertaken and a discussion paper prepared. Problems encountered by the WA Clinical Trials Scheme were similar to those reported by the administrators of schemes in NSW, Qld and Victoria. The report was discussed at the CaPCREU Advisory Group meeting where attendees suggested that the Clinical Trials Scheme should continue in its current format. The CaPCREU, however, should also consider alternative methods of supporting clinical trials participation. A clinical trials reference group has been formed to support the CaPCREU develop a clinical trials action plan.

Status: Evaluation completed

Discussions underway about future directions for clinical trials funding and support

Funding (of evaluation): CaPCREU funded

Outputs: Report completed

4.2 RESEARCH

The CaPCREU has collaborated extensively with the WACPCN, cancer clinicians, health service providers and researchers to identify a number of health services research priorities. Following is a summary of progress on projects already in progress and new studies commenced in the reporting period.

Colonoscopy Prioritisation Project

The aim of the colonoscopy prioritisation project is to improve the effectiveness of the colonoscopy referral process, with the aim of reducing delays in cancer diagnosis. This will be accomplished by implementing a system, which will require that patients referred for a colonoscopy complete a questionnaire about their symptoms. The data from this questionnaire will be used to determine patients’ risk of having colorectal cancer or a benign condition, so that colonoscopies can be prioritised accordingly. It is anticipated that this system will reduce colonoscopy waiting times and will consequently reduce unnecessary delays in cancer diagnosis for patients with symptoms that indicate a high risk of early colorectal cancer. Initially, the project will be implemented as a Quality Improvement (QI) activity at SCGH, with QI approval obtained from SCGH.

Status: Project approved as a QI project. Database design and implementation planning almost complete. To commence in July 2012

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Funding: WA Cancer and Palliative Care Network

Outputs: Poster presentation COSA 2011

Emergency presentations and/or unplanned admissions to hospital in the

first year following a diagnosis of cancer

This project aims to identify the reasons why cancer patients, in the first year following a diagnosis of cancer, present to an emergency department (ED) in Western Australia or have an unplanned or emergency admission to hospital. The project will identify the outcomes of these patients’ ED presentations and/or admissions as well as areas where care could be improved.

As little data is available about oncological emergencies, the study will have a significant role in informing clinical and policy managers about patterns of oncological emergencies and their management in Western Australia.

Status: Ethics approval received; awaiting data from Data Linkage WA

Funding: Unfunded at present

Outputs: Nil to date

Patterns of health services provision to adolescents and young adults with

cancer in Western Australia

In Western Australia (WA), information on current health service utilisation patterns among Adolescent and Young Adults (AYAs) with cancer is needed to develop and evaluate strategies that target services provision to improve AYA cancer outcomes. The aim of this project is to determine current patterns in treatment setting, clinical trial enrolment, and the provision of multidisciplinary, psychosocial and supportive care to AYAs with cancer in WA. This project is being conducted by Nicole Shirazee, who was employed by CaPCREU until December 2011, as part of her Master of Public Health. Data analysis is complete and report writing (MPH minor thesis and scientific paper) is in progress.

Status: Data analysis complete. Thesis being drafted

Funding: CaPCREU

Outputs: Poster presentation COSA 2011

MPH minor thesis submitted


Osteoradionecrosis of the jaw in people with head and neck cancers

This pilot project will determine the level and sort of dental care received by people with head and neck cancers prior to, during and after their treatment at SCGH, where patients are not routinely seen by an oral medicine specialist as part of their multidisciplinary care. The project will identify the incidence and severity of osteoradionecrosis (ORN) in people diagnosed with head and neck cancers at SCGH, and investigate any association between ORN and the dental care received. A second phase of the project is proposed to investigate the effect of integration of oral medicine into the multidisciplinary care of people with head

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and neck cancers. Findings from this research will inform the delivery of optimal dental care for people with this debilitating cancer.

Status: Phase 1 data collection underway

Funding: SCGH Research Advisory Committee grant, CCWA summer scholarship recipient in 2011

Outputs: Scientific papers x 2 in preparation


General practitioners’ preferences and cancer management

The Australian Government is moving to expand the role of general practitioners (GPs) in the management of people diagnosed with cancer. It is also supporting initiatives to encourage GPs to be more actively involved with specialists in caring for people with active disease. While there are varying levels of GP involvement, GPs’ interest and the degree to which they desire to be involved remains largely unexplored. The CaPCREU conducted a cross-sectional survey of 2000 GPs from around Australia to elicit their preferences for being involved in the care of people diagnosed with cancer. Data collection is complete and analyses almost finalised. Results show that the majority of GPs want to be involved in most aspects of cancer care except post-operative management, co-ordination of treatment and supportive care.

Status: Final analyses in progress

Funding: CaPCREU

Outputs: Oral presentation at COSA 2011

Paper 1 submitted to the Asia Pacific Journal of Oncology- April 2012

Paper 2 in preparation for Supportive Care in Cancer

Peer review of multi-disciplinary cancer teams: a mechanism for

promoting best practice in Australia

The WA Health Cancer Services Framework recommended the development of multidisciplinary teams to ensure best practice in the delivery of care for people with a cancer diagnosis. The Framework recommended that guidelines and standards for MDTs be available and that a structure for accreditation and monitoring be put in place. This project will develop and pilot test an audit and peer review process as a mechanism for ongoing monitoring of MDTs and for quality improvement, as recommended in the WA Health Cancer Services Framework.

Status: Development of the peer review framework is underway.

Ethics approvals finalised

Funding: CCWA Post Doctoral Fellowship/CaPCREU funded

Pfizer early career grant application submitted


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Does discussion by a multi-disciplinary cancer team result in improved

outcomes for people diagnosed with colorectal cancer?

While health policy and cancer services actively promote multi-disciplinary care and the discussion of cases at MDT meetings at significant points in cancer trajectories, there is no empirical evidence that discussion at an MDT meeting improves care or outcomes for people diagnosed with cancer. This project will use linked data to compare adherence to treatment guidelines, access to clinical trials and survival between people discussed at an MDT and those that are not.

Status: Research proposal development in progress

Funding: CCWA Post Doctoral Fellowship/CaPCREU funded

Tonkins Foundation (SJOG Subiaco) grant application in preparation


Cancer Research and Funding in WA. An overview from 2008 - 2010

The CaPCREU undertook an audit of cancer research carried out in WA over three years to December 2010. This information will be vital in informing funding and policy for cancer research in the future.

Status: Project completed

Funding: The Cancer Council WA and the Western Australian Cancer and Palliative Care Network

Outputs: Research Report

Paper published - Cancer Matters Nov 2011

Oral presentation at State Cancer Conference 2011 and Poster at COSA 2011

Psychosocial needs of adolescents and young adults

CaPCREU collaborated with the WACPCN and Curtin University to conduct a study which examined the psychosocial needs of adolescents and young adults (AYAs) aged 13 to 24 years who are receiving cancer treatment in Western Australia. AYAs diagnosed with cancer do have some unique issues that need to be addressed to support and inform them during their cancer journey in an adult hospital.

This report made a number of important recommendations to improve the support and care provided to adolescents and young adults when treated in adult hospitals in WA and for implementation of services for AYAs treated in the new Comprehensive Cancer Centre.

Status: Project completed

Funding: Time reimbursed by Western Australian Cancer and Palliative Care Network, CanTeen

Outputs: Project report

Oral presentation at State Cancer Conference 2011


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Routine screening for distress

This is an ongoing project which aims to evaluate the routine use of the Distress Thermometer in screening all people diagnosed with cancer for distress. The CaPCREU has partnered with the School of Surgery and the SCGH Haematology Care Centre to map referral pathways for people with distress and pilot test the use of the Distress Thermometer in conjunction with the referral pathway. The research team has encountered difficulties recruiting participant numbers and has made amendments to the protocol to facilitate participant recruitment.

Status: Data collection in progress

Funding: SolarisCare, SCGH Research Advisory Committee grant

Outputs: Poster presentation at COSA 2010



Chemotherapy delays in outpatient oncology

Before completion of the new Comprehensive Cancer Centre (CCC) at the QEII Medical Centre, a service mapping of the current chemotherapy outpatient services at Sir Charles Gairdner Hospital is proposed in order to identify any avoidable delays experienced by patients. The information obtained will be used to improve the chemotherapy outpatient service when it is transferred to the new CCC. It is anticipated that the outcomes of the audit will have benefits for both staff and patients.

Status: Ethics approval granted. Mapping to begin August 2012



Validation of the Palliative Care Problem Severity Score Instrument

Palliative Care Outcomes Collaborative (PCOC) endeavours to use standardised validated clinical assessment tools to benchmark and measure outcomes in palliative care. The Palliative Care Problem Severity Score is a clinician-rated screening tool used by PCOC services to identify patients with high level concerns in four domains of care (pain, other symptoms, psychological and spiritual concerns, family distress) which may need further/alternative intervention. While this instrument has been used consistently for a number of years, no validation data is publicly available. In collaboration with the national PCOC office, the CaPCREU will test the instrument for inter-rater reliability and construct validity.

Status: Proposal development in progress

Funding: PCOC / CaPCREU


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Evaluation of the clinical impact and cost-effectiveness of EBUS-TBNA

biopsy

EBUS-TBNA combines diagnostic and loco-regional staging properties and therefore will reduce the number of interventional procedures required in the diagnosis and staging of lung malignancies. Prior to its introduction, separate procedures were often required for diagnosis and the staging of lymph nodes in the mediastinum. This study aims to evaluate the utility of EBUS-TBNA biopsy in the diagnosis and staging of lung cancer and other malignancies and to determine the impact of this procedure on patient management. The objectives are to:

• Evaluate the procedures undertaken to diagnose and stage lung cancer prior to the use of EBUS-TBNA in patients with lung cancer and other malignancies and compare to procedures undertaken with the availability and use of EBUS-TBNA.

• Measure the time between first presentation and treatment decision pre-post EBUS-TBNA.

• Analyse the cost-effectiveness and impact of EBUS-TBNA on the cost of clinical decision making in lung cancer.

Status: Detailed proposal development and ethics application are in preparation



What influences the outcomes for patients undergoing upper gastro-

intestinal surgery in WA?

A number of changes have been made to the provision of care for patients treated for upper gastrointestinal cancer in the last few years. This study aims to identify if the changes have improved outcomes, what influenced the outcomes and where changes in service provision still need to be addressed. The objectives are:

• Identify the short term outcomes for those undergoing surgery for upper gastro-intestinal cancer in any hospital in WA during the time period.

• Identify survival for those undergoing surgery for upper gastro-intestinal cancer in any hospital in WA during the time period.

Status: Detailed proposal development and ethics application are in preparation

Funding: Pending


4.3 SERVICE DELIVERY & QUALITY IMPROVEMENT

The CaPCREU has increasingly taken a role in undertaking and supporting the WACPCN with quality improvement activities. This has involved supporting groups to use evaluation as a quality improvement tool as well as being actively involved in promoting quality improvement in clinical practice.

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Palliative Care Outcomes Collaborative (PCOC)

To ensure the provision of high quality palliative care, it is important that services be able to determine and measure the impact of their service delivery, and the outcomes they offer people with a life-limiting illness, their families and carers. PCOC is a voluntary quality program utilising standardised validated clinical assessment tools to benchmark and measure outcomes in palliative care. PCOC is managed through a national collaboration of four universities; the CaPCREU coordinates PCOC in Western Australia. The PCOC Quality Improvement Facilitator (QIF) continues to liaise with palliative care services to support the routine use of clinical assessment tools for care planning and to ensure a standardised approach to using the assessment tools for data collection. The QIF provides ongoing help to services to use the data for quality improvement purposes.

Status: Ongoing support to palliative care services throughout the state

Funding: University of Wollongong / Australian Government Department of Health and Ageing

Outputs: Individual services and state PCOC reports produced in September 2011 and March 2012

Nine PCOC Assessment Workshops conducted throughout 12 months

State Champions meeting conducted in October 2011

Abstract accepted for the Australian Nurse Practitioner’s Conference, Sept 2012

Three abstracts submitted for the WA Palliative Care Conference, Oct 2012

Paper in preparation

Rollout of Routine Assessment in Palliative Care

The need for improved and consistent quality palliative care provision has been identified as a priority in regional, rural and remote WA. The Rural Palliative Care Model of Care seeks to address this need as well as the associated challenges in providing optimal palliative care in country WA. The WACPCN, in partnership with PCOC, have developed a quality improvement model that aims to assist health services develop, improve and sustain quality palliative care through the introduction of routine assessment and care planning for palliative care patients in WA. The CaPCREU will develop and deliver training in the routine assessment of palliative care patients and planning care to address identified needs. The program is currently being pilot tested and modified in the South West Region of WA prior to rollout throughout the WA Country Health Services.

Status: Program and tools being pilot tested and modified

Funding: PCOC / CaPCREU, WA Cancer and Palliative Care Network

Outputs: Pilot workshops x 2 completed

Health Services Research Workshops

One of the CaPCREU’s initiatives is to support clinicians of all disciplines to conduct health services research aimed at improving the care and outcomes of people diagnosed with, and affected by cancer, or who have a terminal illness. To this end, we have commenced a series of half-day Health Services Research Training workshops to address gaps in research

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knowledge for health professionals with little or no research experience from both public and private hospitals. The objective of Workshop series one (December 2011) was to support health professionals prepare a grant application for the CaPCREU Small Grant Scheme. The focus of series two (May 2012) was to develop an understanding of the ethics and governance issues involved in conducting research and the preparation of an ethics application.

Evaluations of the workshops were very positive, with participants indicating that they are keen to be involved in more workshops. Future workshops have been planned and will cover topics such as project management and dissemination of research findings (e.g. writing reports, publications and presenting findings).

Status: Evaluations completed, further workshop planned for November 2012

Funding: CaPCREU funded

Outputs: Evaluation Report completed

4.4 RESEARCH SUPPORT

In addition to the research and evaluation projects, CaPCREU provides support for health professionals who wish to undertake research. In numerous instances, support involves the CaPCREU personnel becoming part of the research team. On other occasions, the CaPCREU research fellows provide advice on an ad hoc basis and by introducing interested parties to other researchers who are known to have an interest in the field. The CaPCREU also assists clinical personnel by making available and administering two streams of research funding: the Small Grant Scheme and the Clinical Trials Scheme.

Small Grant Scheme

After review, it was concluded that the Small Grant Scheme is largely achieving its aim to provide seeding funds for demonstration projects where research findings are translated into cancer and palliative care practice and policy; and pilot studies to improve the success in obtaining research support from national and international funding agencies and industry. Due to its success, a decision was made by the CaPCREU to continue the scheme. The only changes made to the scheme were to clarify that the focus of the research being undertaken must be clinical or health services-related and that a practicing clinician/health professional must be an investigator on the project and the lead investigator must have a clinical background.

The 2012 round of the Small Grant Scheme closed in March and resulted in 28 applications, 15 of which were successful. A total of $283,206 was awarded for project costs and an additional $35,000 was awarded to academic researchers who have committed to mentor and provide additional research support to novice health professional researchers.

Clinical Trials Scheme

Applications were called for Round 3 of the Clinical Trials Scheme in May 2011 and closed at the end of June. Ten applications were received for this round: six were for a continuation of funding and four were new applications. Applications were independently peer reviewed and eight applications were successful, one of which was subsequently withdrawn. Individual

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grants ranged from $3200 to $30,000 with a total of $130,000 being awarded. Successful applications came from Royal Perth, Fremantle, Sir Charles Gairdner and Princess Margaret Hospitals and UWA.

4.5 COLLABORATION & COMMUNITY ENGAGEMENT

The CaPCREU personnel are extensively involved in cancer and palliative care health services research and quality improvement in the community. At a State level, the CaPCREU is currently involved in research, evaluation and quality improvement activities with health professionals from Royal Perth, Sir Charles Gairdner, Fremantle and Princess Margaret Hospitals, with several private hospitals and with the WACPCN. Collaboration with other WA academics has also been extensive and ongoing. Numerous projects involve other researchers from within UWA as well as from Curtin University, Edith Cowan University, and the University of Notre Dame. The CaPCREU also maintains an ongoing relationship with the Cancer Council WA.

The CaPCREU continues to contribute at a national and international level. UWA, through the CaPCREU, has become a founding partner of a new national Health Policy Research Institute based in Canberra. Founding membership will provide a mechanism through which we can directly access a network of researchers, policy makers, health practitioners and representatives from local, state and national bodies and will afford us opportunities to partner with other organisations to prepare joint (national) grant applications. Asst Prof Johnson has been appointed as a board member of the Institute.

Asst Prof Johnson has met with representatives from the Cancer Institute NSW (CINSW) and Cancer Australia to discuss projects aimed at improving the way multidisciplinary teams function. Her investigation of clinical trials schemes in Australia also resulted in broad discussions with the Cancer Councils of Victoria and Queensland, the CINSW and Cancer Australia about the potential for a national approach to administering clinical trials and to data collection and reporting. As a result of interstate collaborations, Asst Prof Johnson was invited to join a national collaboration applying for funding for a Research Centre of Excellence in Palliative Care. Asst Prof Johnson continues as a member of the WA Country Health Service Ethics Committee and to work with the DoHWA on various palliative care service implementation committees.

Asst Prof Ives has been invited to share data from her doctoral research and collaborate with Asst Prof Ann Partridge based at the Dana Farber Cancer Institute/Harvard University, Boston, USA and Dr Niels Kroman at the Copenhagen University Hospital, Denmark. W/Prof Christobel Saunders and Asst Prof Ives have been invited to collaborate with the Australian Maternal Outcomes Surveillance Study (AMOSS) based at the University of New South Wales, and their international counterparts in the UK on a study of women diagnosed with breast cancer when pregnant. Both also continue to collaborate with Dr Michelle Peate at the University of Sydney on updates for a Fertility Decision Aid for women diagnosed with breast cancer and are planning collaborations on additional cancer and reproduction ventures.

Both research fellows have contributed to the scientific community through peer review of scientific publications, conference presentations and grant applications. Asst Prof Ives has been involved in a number of professional development activities including the supervision of

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a Master’s and two PhD students, and the examining of a Master’s thesis. She has also reviewed a number of journal articles for the ANZ Journal of Surgery and ANZ Journal of Public Health. She has reviewed project grant applications for the NHMRC and again been asked to review grant and fellowship applications for the National Breast Cancer Foundation. Similarly, Asst Prof Johnson has reviewed publications for the Journal of Palliative Medicine and Supportive Care in Cancer and reviewed grant applications for Cancer Research, UK.

4.6 DISSEMINATION OF RESEARCH FINDINGS

The CaPCREU personnel have continued to disseminate their research findings during the reporting period. A number of oral papers highlighting the work undertaken by CaPCREU were presented at COSA in November 2011. Several peer reviewed papers have been published with several other scientific papers in preparation.

Peer reviewed Journal Publications

1. Johnson CE , Lizama N, Garg N, Ghosh M, Emery J, Saunders C . Australian general practitioners’ preferences for managing the care of people diagnosed with cancer Asia-Pacific Journal of Clinical Oncology- Under editorial review (C1)

2. Girgis A, Lambert S, Johnson C, Waller A, Currow D. Is anyone caring for the caregivers? The physical, psychosocial, relationship and economic burden of caring for people with cancer. Journal of Oncology Practice – Under editorial review (C2)

3. Waller A, Girgis A, Johnson C, Lecathelinais C, Sibbritt D, Forstner D, et al. Improving Outcomes for People With Progressive Cancer: Interrupted Time Series Trial of a Needs Assessment Intervention. Journal of Pain and Symptom Management, 2012;43(3), 569-581. http://www.sciencedirect.com/science/article/pii/S0885392411004519 (IF =2.874 C1)

4. Shirazee N, Musiello T, Johnson C, Saunders C, Cancer research and funding in Western Australia: an overview from 2008-2010. Cancer Forum published online: NOV 2011http://www.cancerforum.org.au/Issues/2011/November/Reports/Cancer_research_funding_WA.htm (IF=N/A C3)

5. Johnson CE, Mitchell GK, Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care (letter to the editor). Medical Journal of Australia 2011;195(6):267 (IF=2.894, (1) C4)

Books, Chapters

1. Saunders C, Ives A, Musiello T. Pregnancy and Fertility in Breast Cancer Survivors Textbook of Preconceptional Medicine and Counselling: Sapiens publishing; (2012)

2. Saunders C, Ives A. Breast cancer and pregnancy in: Benson J, Tuttle T, and Gui G (eds) Early Breast Cancer: From Screening to Multidisciplinary Management (under editorial review)

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Conference presentations

1. Shirazee N , Musiello T, Johnson C, Saunders C. Cancer research and funding in Western Australia: an overview from 2008 to 2010. Asia-Pacific Journal of Clinical Oncology, 7(S4); 114. COSA 38th Annual Scientific Conference, Perth, 15-17 November 2011. (Best of the best poster presentation)

2. Johnson CE, Saunders CM, Garg NK, Gosh M. General practitioners’ preferences for involvement in the management of people diagnosed with cancer. Asia-Pacific Journal of Clinical Oncology, 7(S4); 71-107. COSA 38th Annual Scientific Conference, Perth, 15-17 November 2011. (Best of the best oral presentation)

3. A Ives, M Walker, R Hodder, H Ee. Enhancing the prioritisation system for patients referred for colonoscopy in a WA tertiary hospital. COSA, Perth, 15 November 2011. (Poster)

4. A Ives , N Shirazee, D Preen, H Lund, J Collins, M Phillips. Patterns of health services provision to adolescents and young adults with cancer in Western Australia. COSA, Perth, 15 November 2011. (Poster)

5. A Ives . (Invited speaker) Breast cancer and pregnancy. National Breast Cancer Foundation Annual Pink Ribbon Breakfast. Broome, 13 October 2011.

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4.7 RESEARCH FUNDING

During the reporting period, the CaPCREU researchers attracted $1,040,000 of competitive and non-competitive research funding, detailed in table 1.

Table 1: Successful funding awarded July 2011 to Ju ne 2012

Title Investigators Funding source

Years Funded

Funds applied for/Rec’d

A program of research to optimise quality of care for people with cancer and their families: A peer review framework to promote best practice in multi-disciplinary cancer teams in Australia.

Johnson C Cancer Council WA/McCusker Foundation Post-Doctoral Fellowship

2012-14 $225,000

An evaluation of dental care for people with head and neck cancer receiving radiotherapy and the incidence and severity of osteoradionecrosis of the jaw - a pilot study.

Chee R Johnson C Jenkin R Frydrych A Slack-Smith L

Sir Charles Gairdner Hospital Research Advisory Committee

2011/12 $29,975

Routine screening and management of distress in people with cancer in WA: a pilot study of people with haematological malignancies treated in an outpatient setting.

Musiello T Joske D Johnson C Miller L O’Connor M

Sir Charles Gairdner Hospital Research Advisory Committee

2011/12 $29,975

Cancer and Health Services Research. Saunders C WA DOH 2011-12 $700,000 Assessment of clinical impact and cost-effectiveness of endobronchial ultrasound-guided procedures for evaluating mediastinal lymphadenopathy in pulmonary medicine.

Johnson C Ives A Slavova-Azmanova N Phillips M Bydder S Li I

WA DOH 2012-13 $115,000

Breast cancer in pregnancy: Surveillance, management, outcomes and experiences.

Sullivan E Saunders C Dickinson J Boyle F Ives A Halliday L Rose-Humphries N

NBCF 2012-13 $200,000

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5. ADMINISTRATION

5.1 PERSONNEL

CaPCREU continues to be supported by a dedicated team. Current staffing is as follows:

• Research Assistant Professor Claire Johnson (1.0 FTE)

• Research Assistant Professor Angela Ives (0.8 FTE)

• Catalina Lizama – Administration/Research assistant (0.6 FTE) – commenced November 2011

• Glenys Dixon – Administration/Research officer (0.2 FTE)

• Dr Neli Slavova–Azmanova –- Senior research officer (0.8 FTE) – commenced February 2012

• Livia Haddow – Research officer (1.0 FTE) – commenced February 2012

• Laura Emery – Research officer (0.4 FTE)

• Tanya Pidgeon – Palliative Care Outcomes Collaborative Quality Improvement Facilitator (1.0FTE)

• Rachel Singer – Casual research assistant

• Dr Lara Andrews – Casual research assistant

Dr Natalia Lizama, employed by the WACPCN, is also working with the CaPCREU team on two projects which are being undertaken in collaboration with the Network.

5.2 PROFESSIONAL DEVELOPMENT

The CaPCREU personnel have been involved in a number of professional development activities during the reporting period. Team members attended several conferences during the reporting period. Tanya Pidgeon, the PCOC QIF attended three national palliative care benchmarking workshops and the Palliative Care Australia conference in August, and four members of the team attended COSA in November, 2011. Most staff members have undertaken a professional development review and have professional development activities planned for the next twelve months.

Four of CaPCREU’s permanent staff are currently enrolled in post graduate studies. Tanya Pidgeon and Catalina Lizama are studying towards a Master’s of Public Health by coursework. Laura Emery is undertaking a Master’s of Medical Science by Research and Livia Haddow will commence a Master’s of Biostatistics in the second semester of 2012. Dr Natalia Lizama is also enrolled in a Master’s of Public Health by Research. In addition to formal study, staff members continue to access short courses and professional development opportunities within UWA, the Cancer Council WA and the DoHWA.

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5.3 EXECUTIVE MANAGEMENT

The CaPCREU’s activities continue to be overseen by a steering group made up of members from UWA (Winthrop Professor Lin Fritschi and Professor David Preen) and Curtin University (Professor Samar Aoun). The Steering Group meets with the working group on a monthly basis (as members are available) and provides the CaPCREU team with both strategic and project-specific advice and direction.

The broader Advisory Group, made up of cancer and palliative care research academics, health managers and providers and consumer representatives, met in February 2012. This meeting was advised of CaPCREU’s ongoing activities and input was sought from members about the future direction of CaPCREU’s research funding programs: the Small Grant Scheme and the Clinical Trials Scheme.

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APPENDIX 1 CAPCREU WORK PLAN July 2011-June 2013

Objectives Strategies

1 Evaluate the impact of the WACPCN on cancer and palliative care outcomes in WA

Evaluate current WACPCN projects and programs.

2 Facilitate an increase in the capacity for cancer and palliative care health services research in WA

Fund and administer a grants program to support cancer and palliative care health services research and evaluation.

Provide health services research training and research support to health care providers and WACPCN project staff.

Undertake and support high quality research which is responsive to the needs of people diagnosed with cancer and at the end of life in WA.

Encourage and support health care providers to translate research findings into policy and practice.

Support the conduct of and access to clinical trials.

Support the development and utilisation of the population-based data sets for cancer and palliative care services research.

Facilitate and support the development of collaborative links between researchers and health professionals at a local, national and international level.

3 Encourage and support health care providers to translate research findings into policy and practice

Provide evidence for the development of health policy and practice.

Support health services to undertake quality improvement activities using evaluation and research evidence.

Assist health professionals to disseminate research findings.

Collaborate with the Cancer Council WA to provide dissemination opportunities.

4 Maintain a clear corporate identity for the ethical conduct of, and support for, health services research in WA

Develop a recognisable the CaPCREU profile.

Develop and maintain a reputation for supporting and conducting research in an ethical and transparent manner.

Ensure appropriate administrative and research oversight of the Unit’s activities.

5 Ensure the sustainability of the CaPCREU

Effectively disseminate and showcase the work undertaken by the CaPCREU.

Demonstrate the effectiveness of the CaPCREU.

Seek independent funding streams.

Cancer and Palliative Care Research and Evaluation Unit ......Poster at COSA 2010 Progress reports...

Documents

Transcript of Cancer and Palliative Care Research and Evaluation Unit ......Poster at COSA 2010 Progress reports...