Sarcoma capability audit: a register of centres of excellence

Author:	Sally Whyte and Sophie Gatenby
Contact details:	sally.whyte@petermac.org

Abstract

The Australasian Sarcoma Study Group was formed in 2008 to improve the outcomes for sarcomas and related tumours in the Australian community through research and development. The group provides the infrastructure for collaboration between multi-disciplinary teams; to establish this framework, an audit of existing sarcoma treatment centres within Australia was undertaken. An online survey of 15 centres was designed primarily to compile a register of sarcoma treatment centres of excellence and to determine the services offered at those sites. A secondary purpose was to gain knowledge about infrastructure and the capability of sites to conduct sarcoma research. This information has been transformed into a website resource for sarcoma patients, their family and friends, clinicians and other health care professionals, and the general community. Four key features of the website are: ‘Find a Specialist’, ‘Find a Clinical Study’, ‘Find Someone to Talk to’ and ‘Ask a Question’. This audit has provided the foundation knowledge and information required to create a reliable, useful resource for patients and the scientific community. The immediate utility realised from this audit suggests that replication of the survey for international sarcoma treatment centres may prove equally advantageous.

The Australasian Sarcoma Study Group was formed in January 2008 to improve the outcomes for sarcomas and related tumours in the Australian community through research and development. Given the aggressive nature and rarity of sarcoma, it was recognised that a collaborative approach was needed to fight the disease. One strategy was to use multi-disciplinary teams in the clinical sense to create a network of clinicians, allied health workers, nurses and researchers within Australia and internationally, all of whom share the common goal of finding solutions to treat sarcoma. The group provides the infrastructure for collaboration between multi-disciplinary teams and to establish this framework, an audit of existing sarcoma treatment centres within Australia was undertaken. The outcome of the audit has been translated into a resource: the Australasian Sarcoma Study Group website www.australiansarcomagroup.org. In this paper, the foundation and membership of the group is described, an outline of the survey is provided and the results are presented as they relate to the key features of the website.

Australasian Sarcoma Study Group: foundation and membership

In January 2008, with funding from Cancer Australia, the Australasian Sarcoma Study Group established itself as a national cooperative cancer clinical research group and commenced operation. From 2009, the University of Melbourne became the administering institution for the group through Cancer Australia’s ‘Support for Cancer Clinical Research Program’.1 Under this program, the Australian Government provides funding to build Australia’s capacity to conduct cancer clinical research. The Australasian Sarcoma Study Group is one of 13 multisite collaborative national cancer clinical trials groups supported under the program. Groups were established to help reduce the impact of cancer in the community through facilitating coordination of and collaboration between all stakeholders, including people affected through cancer, health professionals, researchers, cancer organisations and governments. The group has grown significantly in a short period in both membership and achievement, with work focusing on three areas: research, engagement and organisation.

The broad aim of the group is to improve outcomes for sarcoma and related tumours in the Australian community by undertaking basic, translational, clinical and supportive care research. The foundation goals include: taking a leadership role nationally and internationally in this research; identifying unique strengths and opportunities in the Australian environment; developing a particular focus on adolescents and young adults; and building bridges with local, national and international communities.2

The strategic principles that underpin this work include: developing a deep commitment within the group to all aspects of sarcoma research, care and education; integrating both paediatric and adult sarcoma communities; participating in global research collaborations encompassing strengths in basic, translational and clinical research; investing in the infrastructure that builds basic and clinical research capacity; and partnering with the wider community through government and philanthropic bodies to focus greater awareness and support for sarcoma research.

Specifically, the objectives are to: develop a collaborative network of specialist sarcoma units conducting research; establish a national, integrated clinical database and biospecimen bank to support research; foster an emphasis on translational research between bench and bedside; build specific bridges between paediatric and adult sarcoma communities; increase capacity by developing partnerships between the scientific, clinical and wider community; and undertake ethically sound and academically rigorous research in collaboration with the pharmaceutical industry. Achieving these goals relies on a network of committed individuals across Australasia.

The current membership of the group stands at 161 and comprises representatives from the range of health related disciplines and consumers/supporters from the general community. The predominant medical disciplines are: medical oncology (n=24); radiation oncology (n=22); surgical/orthopaedic oncology and general surgery (n= 27); paediatric oncology (n=22); pathology (n=15); radiology (n=5) and nuclear medicine (n=2). Twenty seven members are engaged in full-time research/biostatistics, nine are nurses, six are from allied health fields and four are consumers.

Capability audit: survey and results

An online survey was designed primarily to compile a register of sarcoma treatment centres of excellence and to determine the services that were offered at those sites. A secondary purpose was to gain knowledge about infrastructure and the capability of sites to conduct sarcoma research. Overall, this information was collected to assist the group to function as a coordinated, national, collaborative research group. Each site was asked to complete a survey comprising eight questions addressing: sarcoma centre details; disciplines offered; service types; centre facilities; multi-disciplinary sarcoma teams; research program; request for other relevant information; and expression of interest in receiving information about the group. In total, 15 centres were invited to complete the survey and all 15 responded with a complete data set. Table 1 displays the sites that participated in the survey.

View larger version 97.74 KB:
[in this window]
[in a new window]

Table 1. Sarcoma treatment centres - capability audit sites

Services

At all 15 sites, either a medical (80%) or paediatric oncologist (47%) practised, while most sites also employed either a surgical (93%) or radiation oncologist (93%). Similarly, all sites (100%) reported employing the range of allied health personnel - social workers, psychologists, physiotherapists, occupational therapists and nutritionists. Twelve sites (80%) offered the services of a clinical nurse consultant or co-ordinator. All sites provided access to palliative care, pathology and haematology services. Other services available included podiatry and education, with the latter being for the paediatric and adolescent populations.

Regarding diagnostic services, all sites offered MRI scanning, with 73% offering FDG-PET and 93% intervention radiology; only the Peter MacCallum Cancer Centre reported offering alternative scanning devices such as FAZA, FLT and F-MISO.

Sites treated either adults or paediatrics, or both - Prince of Wales Hospital in New South Wales and Sir Charles Gardiner Hospital in Western Australia treat both adult and paediatric patients. All sites treated out-patients and in-patients, with the exception of the Adelaide Cancer Centre. Noteworthy, the Adelaide Cancer Centre is known as a specialist outpatient centre, whereas all other sites are multi-facility hospitals.

Table 2 summarises the distributions for disciplines, diagnostics services, age range and ambulatory care.

View larger version 108.76 KB:
[in this window]
[in a new window]

Table 2. Summary of sarcoma treatment centre - distributions for discipline, diagnostic services, age range and ambulatory care

Multidisciplinary teams

All 15 sites held multidisciplinary team meetings and of these, eight (53%) were held on a weekly basis. Of the remaining sites, three (20%) held meetings monthly and four (13%) met as required (26%).

Clinical research

All sites reported involvement in hospital run clinical trials. Moreover, all sites expressed willingness to participate in multi-centre trials and provided at least one specialist contact to receive inquiries about clinical research. Eight per cent (n=12) of sites reported recording sarcoma specific clinical data while 73% (n=11) collected sarcoma biospecimens. Table 3 highlights the scope of capability for conducting a range of clinical research.

View larger version 86.04 KB:
[in this window]
[in a new window]

Table 3. Sarcoma treatment centres - clinical research capability

Australasian Sarcoma Study Group website

To facilitate an effective, national, collaborative research group, certain prerequisites are essential and need to be located at most participating centres. The aims of the audit were to: develop a register of sarcoma treatment centres of excellence; determine the services that were offered at those sites; and gain knowledge about infrastructure and capability to conduct sarcoma research. The results from this audit demonstrate that the foundation for multi-site, collaborative research clearly exists. Furthermore, the critical infrastructure – well functioning multidisciplinary teams – is also present in sufficient quantity at each of the 15 sites. This information has been transformed into a website resource for sarcoma patients, their families and friends, clinicians and other health care professionals, and the general community - www.australiansarcomastudygroup.org.

The ‘Find a Specialist’ feature on the website provides contact details for multidisciplinary teams who are members of the group and who specialise in sarcoma care and conduct specific clinical studies for sarcoma patients in each state in Australia. The group adopted recommendations for the management of patients with sarcoma from the National Cancer Control Network (US)3 and the National Institute for Health and Clinical Excellence (UK),4 but with modifications for the Australian setting. A critical component of these recommendations is that all patients with sarcoma should be treated at centres with appropriate expertise and relevant multidisciplinary teams.

The overarching aim of the group is to facilitate clinical research in sarcoma. Clinical research encompasses drug or intervention studies, systems of health care delivery, measures of the impact of disease on the community (epidemiology), research into the genetic basis of cancer in a human context, as well as research into the psychosocial and quality of life impacts of cancer. The group is committed to facilitating access for all Australian sarcoma patients to a diverse range of well designed clinical research studies, where the knowledge that is generated will have a substantial international impact on outcomes in this disease. The research program comprises clinical trials, familial studies, supportive care initiatives and data analysis reviews. A search engine enables users to locate a study by tumour type, age group or location. Given the varying needs of paediatric, adolescent, young adult and adult populations, it is useful to be able to identify protocols that specifically care for these groups and potentially, also increases recruitment.

The ‘Find Someone to Talk To’ function offers contact numbers for a range of services such as: individual, family and group counselling; education and information; and advocacy. It also assists in providing community referrals. Many people and their families often feel fearful and anxious about their diagnosis and impending treatment - knowledge and support are important in coping with these fears. Multidisciplinary teams have members available to assist in supporting patients and their families during this time.

Modern technology has transformed the capability for and expectation of sharing information across the globe. The group website encourages users to ‘Contact Us’ or ‘Ask A Question’. In just six months, more than 30 requests have been received through email or telephone for: information about sarcoma, the group or fundraising; assistance generally about sarcoma or particularly to locate a specialist; and from consumers wanting to participate in research, find studies that are being conducted or to inquire about potential trials that might be opening. Having a database of contact details gleaned from the audit has enabled these requests to be re-directed within 24 hours of an inquiry. Feedback about this service has been positive from both the patients and clinicians.

Communication network

Clearly the most useful outcome from the audit is the register of sarcoma treatment centres of excellence. A referral service is one benefit of the database, while another is the opportunity to conduct feasibility surveys to quickly gauge both interest in and capability to conduct specific sarcoma research. Three such feasibility surveys have been conducted in the past six months. The plan is to formally update the register every three months and correspondingly, to refresh the website. Meanwhile, the multidisciplinary teams are asked to contact the group about any changes, which are corrected on the website within 24 hours. The membership database will become web based with the next upgrade of the site planned for 2010.

Clinical database and virtual biospecimen bank

A major project for the group has been to establish a sarcoma clinical database in collaboration with BioGrid Australia,5 and a centralised database recording the inventories of current sarcoma tissue bank sites. A collaborative effort between three major sarcoma centres (Victoria, New South Wales and the Australian Capital Territory) resulted in the development of a minimum sarcoma dataset. In 2009, a federated database, based on the Biogrid system and using the sarcoma minimum dataset, was built, tested and began being populated in Victoria at the Peter MacCallum Cancer Centre (data on 150 patients has since been recorded). Seven more sites are committed to collecting data and are in varying stages of readiness. The model ensures that each site has a server, ethics approval and a data manager employed before data collection commences. When all sites are operational a sarcoma database users group will be formed to achieve anticipated data collection outcomes, such as comparison of epidemiological data and clinical care data, and standards against international benchmarks. A longer term goal is to include paediatric data.

The sarcoma biospecimen bank project runs in parallel with establishing the database. The expected outcome is a register of sarcoma tissue storage that will be posted on the website for researchers to access.

Conclusion

The key role for the Australasian Sarcoma Study Group is to improve outcomes for sarcoma and related tumours in the Australian community by undertaking basic, translational, clinical and supportive care research. To achieve this aim, the group undertook to develop a collaborative network of specialist sarcoma units conducting research, to establish a national, integrated clinical database and biospecimen bank to support research and to increase capacity by developing partnerships between the scientific, clinical and wider community. This audit has provided the foundation knowledge to achieve these objectives and the information required to populate the website and create a reliable, useful resource for patients and the scientific community. The immediate utility realised from this audit suggests that replication of the survey for international sarcoma treatment centres may prove equally advantageous.

References

1. Cancer Australia [monograph on the internet]. Support for clinical trials. Available from: http://www.canceraustralia.gov.au/cancer-australia/research-and-clinical-trials/support-clinical-trials (cited 9/4/10).

2. Thomas D, Whyte S and Choong P. Australian Sarcoma Study Group: Development and Outlook. Cancer Forum. 2009;33(1):25-28.

3. National Comprehensive Cancer Network (Internet). Homepage. Available from: www.nccn.org (cited 9/4/10).

4. National Institute for Health and Clinical Excellence (Internet). Homepage. Available from: www.nice.org.uk (cited 9/4/10).

5. Biogrid Australia (Internet). Homepage. Available from: http://www.biogrid.org.au/wps/portal (cited 9/4/10).

This page was last updated on : Wednesday, 7 July 2010