PoCoG CHAIR REPORT ABOUT THE RESEARCH

Transcription

1 PSYCHO-ONCOLOGY CO-OPERATIVE RESEARCH GROUP RESEARCH REPORT

2 PoCoG CHAIR REPORT It is my great pleasure to report on PoCoG s progress and plans for the future in I am extremely proud to be part of this vibrant, collaborative, co-operative and successful organization, which is unique internationally in its focus on mentoring and developing psycho-oncology research. I believe that PoCoG is leading the way internationally in our field. This was reflected in the very successful IPOS/COSA meeting in Brisbane in 2012, which was co-organised by the Queensland Cancer Council, OZPOS and PoCoG. The quality of presentations at that meeting was outstanding, with Australians strongly represented. PoCoG is now actively contributing to international research efforts through IPOS, with PoCoG members leading both the IPOS Research Committee, and the Early Researchers Committee. June 2013 marked the end of Cancer Australia support for cancer clinical trials funding for as well as the end of the financial year covered in this report. Our third triennium was marked by rapid development of new services and resources as well as consolidation of our governance and standard policies and procedures. We now have a well defined program of work which includes scientific and consumer review, concept development, statistical support and standard operating procedures for psycho-oncology research. We have successfully engaged health and research professionals through our interest groups and joint professional days with OZPOS. The professional days are conducted as part of the COSA ASM and would not have been possible without the society s generosity. I am happy to report that PoCoG has successfully secured three years of funding from Cancer Australia and the Cancer Institute NSW. PoCoG s strategic plans for the new triennium have a focus on: Providing resources for members to develop high quality research protocols particularly through our Standard Operating Procedures (SOPs) Development of interventions amenable to translation, particularly targeting vulnerable groups We are continuing our work in improving outcomes for immigrants with cancer, with PoCoG members already successful in winning three grants to conduct intervention research in this area. We are also fostering new collaborative relationships with CanTeen, the National Indigenous Cancer Network (NiCAN), and Oncology Social Work Australia (OSWA). I am looking forward to what promises to be an exciting period with participation of new collaborators, a strong focus on trial development and improvement of our on-line services. We want to encourage greater participation from our members so please look out for announcements of our events and new initiatives and consider taking part. I expect the next triennium to be as rewarding as the last one. Phyllis Butow Chair, PoCoG ABOUT THE RESEARCH Psycho-oncology is naturally multi-disciplinary and our research focuses on a wide range issues including: Detecting and addressing mental health problems relating to cancer Things that affect well-being and quality of life Investigating and meeting psychological needs of specific populations to ensure that all people diagnosed with cancer, regardless who they are, where they live and what stage of the cancer journey they are at, have access to good care and support Developing resources to help people diagnosed with cancer and their families make the decisions about their care that are right for them Supporting doctors and patients to talk about difficult topics, such as a cancer diagnosis, when cancer is no longer curable, and about what will happen at the end of life Helping people whose cancer treatment has finished to find a way to move forward in life Helping people to develop habits that will reduce their risk of cancer developing or coming back 2

3 EXECUTIVE OFFICE REPORT The PoCoG executive office is the central operations unit of PoCoG, located in the School of Psychology at the University of Sydney. Staffed by enthusiastic and experienced individuals the office manages the day-to-day business of the organisation including research development, coordination and development of membership services, advisory services and organizational policy development. Our operations are funded by federal and state infrastructure grants from Cancer Australia and Cancer Institute NSW. We are very pleased to present the report on membership profile and activities for the financial year 2012/2013. Once again we have seen growth in the membership numbers. Thanks to the initiation of PoCoG s Social Work Project and the initiation of a collaborative relationship with the National Indigenous Cancer Network (NICaN) we have increased numbers of social workers and members from regional areas of Australia. PoCoG now boasts membership representation in every state and territory as well as a growing international associate membership. We have fostered the development of two new interest groups: The Adolescent and Young Adult (AYA) interest group which was set up and is managed collaboratively with CanTeen and the Clinician s Research (CR) interest group initiated by the NSW Psychologists in Oncology group. We continue to provide research support services to members. These include the biostatistics advisory service, web-based networking tools, and the scientific and consumer review processes. In 2012/13 PoCoG held three Open SAC meetings and three Concept Development Workshops, two of which were conducted jointly with other Clinical Trials groups: The Primary Care Cancer Clinical Trials Group (PC4) and the Australia and New Zealand Melanoma Trials Group. The financial year also brought governance changes for PoCoG in order to streamline operational and strategic decisionmaking processes. The changes involved the standing down of the Executive Committee, co-opting its members into the Scientific Advisory Committee (SAC), transferring decision-making powers to the SAC, and convening a small Management Team, consisting of the PoCoG Chair, the PoCoG SAC Chair and Deputy Chair and executive office staff, to manage the day-to-day operations. We continue to develop relationships with Clinical Trials Groups and other cancer stakeholder organisations. In 2012/13, in collaboration with COSA, PoCoG contributed extensively to the development of the Cancer Learning consumer training resource funded by Cancer Australia. The year was also the last year of our existing infrastructure funding. We are happy to report that we have successfully secured ongoing funding from Cancer Australia and Cancer Institute NSW which will allow us to continue to maintain and develop our operations. We would like to thank the PoCoG committee members, our collaborative partners, our funding bodies and our members for their support and input in the last financial year and look forward to strengthening these relationships in the future. 14th International Psycho-Oncology Society (IPOS) World Congress 2012: VENI, VIDI, VICI. When the PoCoG Executive Office put forward the proposal to our Executive Committee in 2010 to bid for the IPOS world congress, we had little idea what kind of a ride we were embarking on. It took us from considering the bid for 2013 with support from Business Events NSW to partnering with Cancer Council QLD and OZPOS for the World Congress in 2012 and eventually organising a joint conference with Clinical Oncology Society Australia in Brisbane. It has been quite an experience! The joint Clinical Oncology Society Australia (COSA) and International Psycho-Oncology Society conference was a tremendous success, boasting 1271 Australian and international delegates. The post event survey revealed that the delegates were very satisfied with both the conference program and the preconference Academy workshops. PoCoG received much recognition and interest as a peak psychooncology research body in Australia. We had many national and international visitors at our exhibitor stand, some of whom became PoCoG members on the spot. We would like to take this opportunity to thank all our members who were involved in the organisation of the scientific program of the IPOS world congress: the National Scientific Advisory Committee members, session chairs and facilitators. We would also like to thank and acknowledge our partner organisations IPOS, COSA, OZPOS and Cancer Council QLD. Melanie Price Executive Director Monika Dzidowska, Executive Officer Joanne Shaw Executive Officer PoCoG s operational activities support the growth of research in psycho-oncology in Australia by: Developing and conducting clinically relevant research projects Becoming the epicenter of research and clinician networks with interest in psycho-oncology. We draw upon their expertise to create effective and dynamic research teams to lead large-scale studies Providing access to scientific excellence, new cutting-edge techniques and educational and mentoring opportunities Developing research infrastructure support and resources such as data management, statistical expertise, standard operating procedures, templates, tools and resources Setting standards in research quality and streamlining research operations 3

4 PoCoG MEMBERSHIP IN PoCoG membership is open to researchers and health professionals with an interest in psycho-oncology research, from within Australia and New Zealand. Membership is free and does not need to be renewed annually. Associate membership is available to international researchers and health professionals who can access all PoCoG services except the PoD and services incurring a financial outlay. Our membership represents a wide range of professional disciplines. The financial year saw an increase in membership from 1021 to 1175 members. Once again psychology, oncology nursing and public health or health promotion were the top three at the end of the financial year 12/13. There was an increase in the social work membership following the initiation of the Social Work Project. We have a significant rural/regional membership of about 9% of the total Australian membership. Our international membership has also grown in the last year from 7.6% to 9.1%. The tables and graphs below represent membership data as reported at the end of the financial year 12/13. Table 1 Professional disciplines represented by PoCoG membership Discipline Number Percentage Psychology % Oncology Nursing % Public Health and/or Health Promotion % Social Work % Medical Oncology % Allied Health % Other Nursing Discipline % Radiation Oncology % Palliative care % Other Medical Discipline % Psychiatry % Palliative Care Nursing % Epidemiology % Health Economics % Biostatistics % Radiation Scientist % Pharmacy 5 0.4% Surgery 5 0.4% Other % PoCoG membership growth PoCoG membership by state or territory % total PoCoG membership ACT NSW 0.3 NT 1.4 QLD SA TAS State or territory VIC WA INT 4

5 INTEREST GROUP HIGHLIGHTS In 2012/13 PoCoG continues to support the interest groups by promoting their activities through the network and providing administrative support. A Clinician s Research Interest Group proposed by Dr Laura Kirsten and Dr Ilona Juraskova was formally approved by the PoCoG SAC in June PoCoG s interest groups are member-led initiatives aiming to promote more proactive involvement of the membership in PoCoG s strategic aims, promote networking and create more opportunities for members to become involved in initiating and developing and participating in collaborative research projects, especially those relevant to the interest group s focus. The interest groups determine their own goals and objectives specific to the purpose of the group and align them with PoCoG s mission and aims. We are always looking for more enthusiastic members who are keen to connect with like-minded people and contribute collaboratively to the development of further research in this area. NEW! PoCoG Clinician s Research Interest Group A PoCoG Clinician s Research Interest Group was proposed by Dr Laura Kirsten and Dr Ilona Juraskova and formally approved by the PoCoG SAC in June The Clinician s Research (CR) Interest Group aims to encourage and foster clinician-initiated research whilst appreciating the limitations encountered when conducting research in a clinical setting. The group has 22 members. Adolescent and Young Adult Interest Group The Adolescent and Young Adult (AYA) Interest Group is a collaboration between PoCoG and Australian Organisation for Young People Living with Cancer (CanTeen) which aims to provide the opportunity for people conducting targeted psycho-social research in the AYA area to participate in a professional network dedicated to them. This research may involve young cancer patients and young survivors of paediatric and adolescent cancer, as well as young people who have had a brother, sister or parent with cancer. It is hoped that this group will facilitate discussion and encourage new learning, increase network opportunities amongst AYA researchers and identify opportunities for collaboration. The group currently has 58 members. The membership of this group has been actively communicating on the PoCoG forum. The group has also welcomed new co-chairs Ursula Sansom-Daly and Fiona McDonald. Plans are being made for a joint PoCoG / CanTeen / Australia and New Zealand Children s Haematology and Oncology Group (ANZCHOG) Concept Development Workshop in Early Career Researchers Interest Group The Early-Career Researcher (ECR) Interest Group aims to provide the opportunity for people junior in their research experience to participate in a professional network dedicated to them and to promote interactions between ECRs and senior researchers in psycho-oncology. The group was initiated and is lead by the ECR members of PoCoG s Scientific Advisory Committee and has 57 members. During the last year the group was been actively involved in organising the program for the International Psycho-oncology Society (IPOS) World Congress. They convened a special breakfast session to provide early career researchers with an opportunity to meet and share ideas with some of the most eminent researchers/clinicians in the field of psycho-oncology. Following the congress Dr Claire Wakefield, the former co-chair of the ECR Interest Group, was appointed ECR advisor to IPOS. With the end of their ECR terms on the PoCoG SAC, Dr Claire Wakefield and Dr Nadine Kasparian stepped down as co-chairs of the Interest Group. The group welcomed the PoCoG SAC ECR members Dr Sheleigh Lawler and Dr Bronwyn Morris as the new co-chairs. Western Australian Interest Group PoCoG WA Research Interest Group was established in 2011 with a view to linking local researchers in order to increase networking capacity, opportunities for collaboration and to raise awareness of the research currently underway in WA. The group aims to bring together researchers, clinicians, health care professionals and consumers with an interest in psych-oncology to foster collaboration and the exchange of ideas. The group has the following: To link local researchers and clinicians working in the psycho-oncology field. To act as a contact point for links to WA recruitment for psycho-oncology research studies, both locally and nationally. To hold regular educational events focused around research topics in the psycho oncology field. To improve links with Universities and support post graduate students interested in the field, both in terms of education and in recruitment for research studies Convene and maintain a local management committee to develop and progress the above objectives. The group s membership currently stands at 22. South Australian Interest Group (SAPoCoG) The South Australian Interest Group of PoCoG was formed early in 2010, increase opportunities for psycho-oncology researchers and clinicians, to facilitate increased awareness by others to identify and develop state-based compatible research and clinical strengths, on which to develop and submit funding applications. The membership of this group stands at 49 members. 5

6 GOVERNANCE SCIENTIFIC ADVISORY COMMITTEE The Scientific Advisory Committee (SAC) is responsible for strategic direction, research priorities of PoCoG and scientific rigour and minimum standards of PoCoG studies. The SAC will also bear the responsibility for organisational decision-making directly relating to strategic direction. The SAC activities include: Setting strategic and scientific direction and priorities and ensuring that these are in line with Cancer Australia principles and key performance indicators Reviewing and providing constructive feedback on proposals for PoCoG involvement in research (either as PoCoG administered or PoCoG endorsed studies) Taking part in the ongoing review of PoCoG studies to ensure their scientific rigour or maintenance of minimal research quality standards The SAC is multidisciplinary with representation from across Australia and includes members with wide-ranging research and clinical expertise related to psycho-oncology PoCoG MANAGEMENT TEAM The Management Team is responsible for overseeing the management of PoCoG, which includes financial and administrative issues, as well as liaison with other clinical trials groups and interaction with key stakeholders. The Team is also responsible for implementing the policies and procedures of PoCoG and operationalising the group s strategic directions and has an advisory role in the strategic direction and decision-making. The management team comprises the executive staff members (Executive Director, Executive Officer, Research Program Manager, Biostatistician), the PoCoG Chair, SAC Chair and SAC Deputy Chair. PC4 AND PoCoG JOINT COMMUNITY ADVISORY GROUP (JCAG) JCAG was formed in August 2010 as a joint initiative between PoCoG and the Primary Care Collaborative Cancer Clinical Trials Group (PC4) in order to promote and increase consumer participation in the activities of both groups. JCAG functions as an advisory group to both PoCoG and PC4. Administratively JCAG functions as a sub-committee of the Scientific Advisory. Committee of both groups. The purpose of the JCAG is to provide a mechanism for advice to be received on general research directions and priorities from a consumer perspective. CHANGES TO THE GOVERNANCE STRUCTURE In July 2013 PoGoG s governance structure was modified by consolidating the Executive Committee and the Scientific Advisory Committee (SAC). The decision-making powers were transferred to the SAC thus simplyfing the governance and strategic decision-making process. The membership of the SAC was also modified and extended to include members co-opted from key professional Social Work and Nursing organisations: OSWA and CNSA. Details of PoCoG s governance structure can be found in the PoCoG Policy and Procedures Manual. GOVERNANCE MEMBERSHIP SAC MEMBERSHIP: Prof. Elizabeth Eakin (SAC Chair) A/Prof. Monika Janda (SAC Deputy Chair) Prof. Phyllis Butow (PoCoG Chair) Dr Haryana Dhillon (OZPOS liaison) Ms Kim Hobbs (OSWA liaison) Dr Donna Milne (CNSA liaison) Mr Max Shub (JCAG representative) Prof. Afaf Girgis* Prof. Brian Kelly A/Prof. Gail Garvey Dr Jeremy Couper Dr Kerry Sherman Prof. David Kissane A/Prof. Meera Agar Dr Nadine Kasparian Dr Claire Wakefield* (ECR) Dr Sheleigh Lawler (ECR) Dr Brownyn Morris (ECR) Dr Danette Langbecker (ECR) Dr Amanda Hutchinson (ECR) MANAGEMENT TEAM MEMBERSHIP: Prof. Phyllis Butow (PoCoG Chair) Prof. Elizabeth Eakin (SAC Chair) Dr Monika Janda (SAC Deputy Chair) Dr Melanie Price (Executive Director) Ms Monika Dzidowska (Executive Officer) Dr Joanne Shaw (Executive Officer) Dr Melanie Bell / Dr Joseph Coll (Biostatisticians) Dr Michelle Peate (Research Program Manager) JCAG MEMBERSHIP: Dr George Fishman Dr Elizabeth Kuczek Ms Julie Marker Mrs Nicki Ottavi (Leave of absence) Mr Max Shub Ms Nikola Stepanov* Ms Nikki Davis *stepped down in

7 PoCoG SAC CHAIR REPORT I am pleased to report on the activities and accomplishments of the PoCoG Scientific Advisory Committee (SAC) over the past year. The SAC provides input to and oversight of the scientific direction of PoCoG s research agenda. As seen in the PoCoG Chair s report, in addition to the descriptive/observational research on psychosocial and socio-demographic factors influencing outcomes for cancer survivors, which has been a cornerstone of psycho-oncology research here in Australia and internationally, PoCoG has increasingly looked to support clinical trials research on interventions that aim to improve quality of life, behavioural and functional outcomes for patients with cancer and their carers. The emphasis here has been on reaching and engaging vulnerable and underserved groups, and on the development and evaluation of interventions capable of being translated into clinical and population health practice the later with continued involvement of the Cancer Research Economics Support Team from the University of Technology Sydney, and collaboration with clinician investigators and health services researchers. In the past year, we have had a number of SAC members come to the end of their three-year terms, and we would like to acknowledge their service to the SAC. These include: Professor Afaf Girgis, Executive Director, Translational Cancer Research Unit, Ingham Institute for Applied Medical Research, University of NSW and Dr Claire Wakefield, Program Leader, Behavioural Sciences Unit, Centre for Children s Cancer and Blood Disorders and School of Women s and Children s Health, University of NSW. We would like to welcome our new SAC members, Professor David Kissane, Head of Discipline of Psychiatry, School of Psychology & Psychiatry, Monash University and Associate Professor Meera Agar, Director of Palliative Care, Braeside Hospital, including our Early Career Representatives, Dr Amanda Hutchinson, Research Fellow, Flinders Centre for Innovation in Cancer, Flinders University and Dr Danette Langbecker, Research Fellow, Institute of Health and Biomedical Innovation, Queensland University of Technology. Dr Nadine Kasparian, who has been an Early Career Researcher representative on the SAC since 2010, has now been appointed as a SAC ordinary member. The work of the SAC is focused around twice-yearly Concept Development Workshops (CDW) and the review of study protocols submitted for PoCoG endorsement. Over the past year, CDWs were held in July and December 2012, and June Pleasingly, two of these were held conjointly with other clinical trials groups, PC4 (Primary Care Collaborative Cancer Clinical Trials Group) and the ANZMTG (Australia and New Zealand Melanoma Trials Group), with the aim of developing a number of jointly supported studies for funding submission. In addition, a stakeholder workshop jointly sponsored by PoCoG and PC4 was held in December 2012 to inform the development and submission of a proposal led by the University of Queensland, School of Population Health Cancer Prevention Research Centre, in collaboration with Cancer Councils NSW, VIC, SA and WA, to integrate and evaluate an evidence based, telephone-delivered lifestyle intervention for cancer survivors into the Cancer Helpline infrastructure. PoCoG has 51 active investigator-initiated studies, of which 26 were actively recruiting in FY 2012/ study participants were recruited, 38% of these from rural/regional areas. Nineteen of these studies were randomized controlled trials (RCT) of psychooncology interventions. A further six RCTs were endorsed in June 2013 PoCoG also had a strong contribution of scientific expertise in the joint IPOS and COSA conference held in Brisbane in November 2012, with impressive leadership of an Early Career Research agenda led by PoCoG Early Career SAC members Dr Claire Wakefield, Dr Nadine Kasparian, Dr Sheleigh Lawler and Dr Bronwyn Morris. The research results presented in this report show evidence of the successful research work taking place among the members of our collaborative group. I would like to acknowledge the effort that PoCoG s researchers put into the conduct of the studies and the reporting of their progress to PoCoG. Elizabeth Eakin, PoCoG SAC Chair UPDATE OF JCAG ACTIVITIES The PC4 and PoCoG Joint Community Advisory Group (JCAG) formed in August 2010 as a joint initiative between PoCoG and the Primary Care Collaborative Cancer Clinical Trials Group (PC4) in order to promote and increase community participation in the activities of both clinical trials groups. Over 3 years, JCAG has consolidated its advisory function to become an integral part of PoCoG and PC4. JCAG members take on a diverse range of roles including: Reviewing research concepts from the community s perspective including the validity of the overall research question; Reviewing information sheets and consent forms of studies endorsed by PoCoG Scientific Advisory Committee (SAC); Participating in working groups; and Attending meetings, forums and conferences on behalf of PC4 and PoCoG. JCAG is unique not only in being a joint shared collaboration, but also by reviewing research proposals covering all cancer types, having community membership (not confined to consumers and carers), as well as a structured peer support pairs model of working. 7

8 JCAG Governance and membership We are an egalitarian group, and have chosen to share opportunities to be involved rather than nominate chair or co-chair positions. A second round of recruitment has just been completed to restore the JCAG to full capacity with 5 ongoing and 7 new members. Briefly describing this recruitment process, a national newspaper advertisement (April 2013) called for expressions of interest. An Introductory Workshop was held in June to provide an overview of PoCoG and PC4 functions, examples of trials and a workshop session with examples of JCAG tasks. It attracted 23 interested respondents, with 4 of the current JCAG assisting in this. Full applications were then invited, and 16 workshop attendees applied to join the JCAG. Following phone interviews 7 very high calibre applicants were selected. An initial 3-year term is offered, with current JCAG members given the option of one maximum 3-year term of renewal. Their terms will commence in the 2013/14 financial year. Reviews During the financial year, JCAG were involved in the following PoCoG activities: Reviewed 19 PoCoG study proposals submitted for endorsement; and Participated in 3 interactive Concept Development Workshops (CDWs) to assist research proposal work-up in multidisciplinary groups. PoCoG CDWs were held in July 2012 and June A very successful first joint PoCoG-PC4 CDW was held in December 2012, with good all-round feedback providing encouragement to do this again. JCAG contributed input to 10 PoCoG concepts through these three CDWs. Representation at meetings and workshops Current JCAG members are: Max Shub, Elizabeth Kuczek, George Fishman, Nikki Davis, Julie Marker. In early 2013 we bid farewell to Dr Nikola Stepanov, and granted time out leave for Nicki Ottavi. Max Shub is the JCAG representative on the SAC. CDWs and Open SAC meetings involved the following JCAG members: July 2012: Nikki Davis, Nicki Ottavi, Nikola Stepanov, Max Shub December 2012: Max Shub, Nikola Stepanov, George Fishman, Nikki Davis, Nicki Ottavi, Elizabeth Kuczek, Julie Marker (CDW and Healthy Living after Cancer Workshop) June 2013: Max Shub An excellent educational workshop was held in August 2012 involving all (then) seven JCAG members. Prof. Phyllis Butow described the process and issues around Informed Consent and Prof. Madeleine King addressed Quality of Life measures. These informative sessions were greatly enjoyed and appreciated by all in the JCAG. The Cancer Trials Consumer Network (CTCN) is a hub for representatives from all 14 Cancer Australia Clinical Trial Groups to share information and expertise. The CTCN has been attended by Max Shub (representing PoCoG) and Nikola Stepanov (representing PC4). Julie Marker has stepped in temporarily since Nikola left the JCAG, until a replacement representative is selected by the group. The CTCN and Clinical Oncology Society of Australia wished to have training resources for members of the Cancer Clinical Trial Consumer Advisory Groups. Since World Cancer Day, 4 February 2013, an online Clinical Trials Consumer Learning Resource funded by Cancer Australia became available at au/ This aims to enhance general community knowledge and skills in partnering with researchers to conduct quality patient-centred clinical trial research. Consumer members of many Cancer Clinical Trial Groups participated in the development of this. JCAG s Max Shub was involved in the design of the modules and usability testing trials prior to completion and launch of the website for public access. All JCAG members have been encouraged to use the site. Other activities JCAG holds regular teleconferences to discuss organisational matters. Working together in peer support pairs has been a successful strategy for JCAG members to generate ideas and discussion around each review, gain confidence, share experience and expertise, and feel part of a team effort despite relatively rare JCAG team face-to-face contact and intermittent JCAG tasks. It also promotes interaction between members outside of review tasks and formal meetings. Peer support contact can occur by , phone or face-to-face meeting as best suits the locality and individual preferences. Nikki Davis JCAG Julie Marker JCAG JCAG meeting - June

9 IPOS/COSA A REPORT FROM OUR JCAG DELEGATE Brief highlights by Julie Marker member of the joint PC4 and PoCoG Joint Community Advisory Group (JCAG) The joint IPOS/COSA was a great conference and very relevant to our JCAG work. A theme of distress to become the 6th vital sign was led by Prof Jimmie Holland, the amazing trailblazer psychiatrist in oncology at Memorial Sloan Kettering Cancer Centre (MSKCC) who helped found the field of Psycho-Oncology. The discussion on this theme was lead by her in the consumer forum, and was reiterated time and time again during the joint IPOS and COSA conference. Vital signs are pulse, respiration, temperature and blood pressure. Recently pain has been added as 5th vital sign. From 2015 distress (depression/anxiety) will need to be routinely monitored and recorded as a 6th vital sign for all accredited cancer centres in the US. Another MSKCC psychiatrist, Bill Breitbart, gave an interesting presentation about cancer and meaning, spirituality and faith, despair and suffering in cancer. His interventions on meaningcentred psychotherapy are based around Victor Frankl s work. He proposed sources of meaning from creativity, experience, attitude and legacy. Meaning or fulfilling a unique role and purpose in life - may be at the core of resilience, and a buffer to cope with pain, fatigue etc. Devon McGoldrick from LIVESTRONG gave an overview of LIVESTRONG consumer-focussed services, gaps in survivorship care shown in results of the 2006 & 2010 Survivorship Survey. Several presenters described ehealth systems for oncology that are working in their centres, using patient reported outcomes for monitoring and informing clinical decisions for individuals throughout treatment, and beyond in survivorship care. Gabriel Leung s health economics presentation about the science and politics of spending on cancer care was provocative, and questioned the bang for buck benefits at the population level from screening programs, and benefit vs harms at the individual level. Rob Sanson-Fisher talked about outcome variations across treatment centres and how much where you get your treatment influences outcomes, questioning why this is and isn t studied. He said the evidence into practice gap is 18 years on average, although the fastest can be as quick as 2 years. Carrie Lethborg gave an excellent overview of social determinants and inequalities in cancer outcomes, showing worse outcomes for those older than 65 years, year olds, non-english speaking, Aboriginal or Torres Strait Islander, rural, solo parents, and low income earners. I learned that Federal Minister for Ageing, Mark Butler, had announced in June this year a Senate Inquiry on Social determinants of health. This was seen as an opportunity for looking at, and improving, equality in cancer care. A number of sessions focussed on Indigenous cancer challenges. Gail Garvey and Patricia Valery gave informative presentations. Despite 21% lower cancer incidence in ATSI people, there is 36% higher cancer mortality. Key issues are the prevalence of more lethal forms of cancer - liver, lung; later stage at diagnosis; the fact that ATSI people are 1.7 times as likely to have 3 or more co-morbidities such as diabetes, hypertension, and chronic renal or acute coronary disease. There is 50% excess mortality in the first year after diagnosis in ATSI people with cancer. Those who survive two years from diagnosis have similar outcomes to non ATSI populations. A number of presentations and posters addressed the results of exercise interventions. Despite benefits in Quality of Life (QoL), fitness and fatigue, most concluded that it is difficult to change long term physical activity behaviour. Several sessions discussed Peer Support and online support. Most were focussing on training, trying to standardise peer support, and using peers almost as an extension of multi-disciplinary teams to reinforce patient compliance. The final session I went to was on lung cancer and stigma. Stigma is another huge invisible burden on the already large burden of lung cancer. Consequences of stigma include - delayed diagnosis & low utilisation of health care services (anticipating denial of care because of smoking), depression and suicide, spousal conflict, diminished social support, effect on clinician behaviour. Julie Marker JCAG Julie Marker received support from Cancer Voices SA to attend the joint Clinical Oncology Society Australia (COSA) and International Psycho- Oncology Society conference held in Brisbane from Nov 2012 Standard Operating Procedures for Psycho-oncology Research PoCoG, as a national Cancer Collaborative Trials Group (CCTG) has the responsibility to ensure that its endorsed studies are conducted to the best possible standards as defined by national and international guidelines and to provide resources to support the implementation of these standards. In light of this, PoCoG in collaboration with an advisory panel of experienced researchers and trial and data managers has been developing a suite of Standard Operating Procedures (SOPs) for psychosocial research. Distinct from the scientific design standards, PoCoG SOPs aim operationalise the procedural standards required to achieve high quality data in psycho-oncology research. The process includes the development of resources to support the implementation of the SOPs such as templates, guidelines and case examples. Since its launch in 2012 we ve been working to expend the first suite of SOPs. The following SOPs are now available from the PoCoG website: Development and review process for Standard Operating Procedures (SOPs) Study management processes Development of a study protocol Data and Document Management Ethics Study Closeout Statistical Analyses Plan A Study Archiving SOP is currently in pilot stage. In November 2012 PoCoG conducted a training workshop on the use of the SOPs. The workshop was held during the joint IPOS World Congress and the Annual Scientific Meeting of COSA. The workshop was well received and the SOPs won a lot of interest from both Australian and international delegates. Ongoing response from research groups which have implemented the SOPs has also been very positive. We would like to encourage our members to trial the use of the SOPs in the setup and conduct of their research project and would welcome feedback in order to continue to improve and further develop this important resource. 9

10 PoCoG STUDIES PoCoG aims to foster collaboration to develop large-scale, multi-centre psycho- oncology studies of clinical relevance and importance which would be difficult for any one team to mount. In light of these aims a PoCoG study should in principle: Target a psychosocial, behavioural or supportive care issue Be amenable to intervention in either short or long-term Be collaborative in nature (with other Clinical Trials Groups, organisations, investigators, psycho-social clinicians) Endeavour to engage populations typically underrepresented in clinical trials Have a strong rationale and methodology Have a PI who is committed to obtaining funding for the study Be industry independent PoCoG endorsed studies are those proposed by a PoCoG member and submitted for endorsement by the PoCoG SAC. Such projects may have widely differing levels of PoCoG involvement or support depending on the investigators or groups needs, ranging from scientific review only, to support in design and data analysis. Investigators also have the option to request that PoCoG fully administers a study on their behalf. If accepted, such study would become a PoCoG administered study. PoCoG supports the development of studies chiefly by providing the scientific review and feedback which is part of the endorsement process, conducting concept development and educational workshops and providing resources such as biostatistical advisory service and access to Quality of Life research services through the Cancer Australia Chair in Cancer Quality of Life. The most recent resources being developed are standard operating procedures and templates for psycho-oncology research. This set of operational guidelines will form part of PoCoG s quality assurance program. For more information about this new initiative please visit our website. Since the inception of the scientific review process in February 2008 the PoCoG Scientific Advisory Committee has been reviewing studies presented for scientific endorsement twice per year resulting in 51 PoCoG studies actively reporting to PoCoG. Twentysix of these studies were recruiting in the financial year 2012/13. Seven are collaborations with other cancer clinical trials groups. The PoCoG Executive Office conducts a follow-up of PoCoG endorsed studies every six months. The data collected is used in planning future activities and resources, quality assurance and reporting to funding bodies. As the new quality assurance process is rolled-out, the follow-up will also increasingly be used in assessing support needs of these studies. Unless otherwise indicated, the tables and graphs below represent study follow-up data as reported at the end of the financial Recruitment by state for studies open to recruitment Growth in PoCoG endorsed studies In Financial Year 11/12 In Financial Year 12/13 NSW ACT 9 14 VIC QLD SA 6 22 WA 1 27 TAS 5 10 NT 0 0 International Total Aust TOTAL (all) Number of endorsed studies Number of studies and Randomised Controlled Trials Number of studies open to recruitment in Financial Year 12/13 26 Number of endorsed RCTs to date 26 Number of RCTs open to recruitment in Financial Year 12/ Dec-08 Dec-09 Dec-10 Jul-11 Jul-12 Jul-13 10

11 PROFILES OF STUDIES OPEN TO RECRUITMENT IN THE 2012/2013 FINANCIAL YEAR PoCoG Does palliative chemotherapy improve symptom control in women with recurrent ovarian cancer? Collaboration with ANZGOG Study aims: Stage 1: To determine the symptoms and aspects of HRQOL that are rated most severe, troublesome and important by women with platinum resistant/refractory ovarian cancer. Stage 2: To determine the proportion of women benefiting from palliative chemotherapy as defined by a clinically significant improvement in HRQOL scores and improvement of symptoms. This study focuses on the qualitative interviews being conducted as part of the larger study. PI: Michael Friedlander CIs: Martin Stockler, Corona Gainford, Madeleine King, Amit Oza, Phyllis Butow Total no. recruited to date: 20 Total no. recruited in FY 2012/13: 1 Sites: Prince of Wales Hospital, NSW; Border Medical Oncology, NSW; Coffs Harbour Hospital, NSW; Newcastle Private Hospital, NSW; Launceston General Hospital, TAS; Calvary Mater Newcastle, NSW; Royal Prince Alfred Hospital, NSW PoCoG The impact of physical activity on quality of life in lung cancer patients (PAL) Collaboration with ALTG The PAL study aims to show whether a structured physical activity program can reduce fatigue in patients diagnosed with advanced lung cancer, as well as improve quality of life and sleep, lessen anxiety and depression, provide improved physical functioning, cognitive function and overall survival. A Physical Activity Consultant works with the study participants to establish a suitable exercise program and provide them with support to complete their programs. We hypothesise that the reduced fatigue and risk of cancer recurrence occurs through the insulin axis and cytokines mechanisms/pathways. PI: Janette Vardy CIs: Haryana Dhillon, Hidde van der Poeg, Michael Boyer, Stephen Clarke, Linda Mileshkin, Melanie Bell, Craig Lewis, Rina Hui Total no. recruited to date: 87 Total no. recruited in FY 2012/13: 18 Sites: Royal Prince Alfred Hospital, NSW; Concord Repatriation General Hospital, NSW; Prince of Wales Hospital, NSW; St George Hospital, NSW; Peter MacCallum Cancer Centre, VIC; Westmead Hospital, NSW; Royal North Shore Hospital, NSW PoCoG A multisite randomised controlled trial evaluating the impact of a comprehensive survivorship care package for people with early stage bowel cancer This study aims to examine the effectiveness of an innovative supportive care program (SurvivorCare) comprising survivorship educational materials, provision of a tailored survivorship care plan, an individually tailored nurse-led end of treatment consultation and telephone follow up for people with potentially curative colorectal cancer, aiming to reduce psychological distress and unmet needs, using a randomised controlled trial. PI: Michael Jefford CIs: Penelope Schofield, Sanchia Aranda, Mei Krishnasamy, Jane Young, Phyllis Butow, Dorothy King Total no. recruited to date: 177 Total no. recruited in FY 2012/13: 114 Sites: Box Hill Hospital, VIC; Monash Medical Centre, VIC; Peninsula Oncology Centre, VIC; Alfred Hospital, Alfred Health, VIC; Cabrini Hospital, VIC; Dandenong Hospital, Southern Health, VIC; Frankston Hospital, Peninsula Health, VIC; Royal Hobart Hospital, TAS; Bendigo Health, VIC; Ballarat Oncology and Haematology Services, VIC; Calvary Mater Newcastle, NSW; Barwon Health, VIC; Newcastle Private Hospital, NSW; Concord Repatriation General Hospital, NSW; Tamworth Base Hospital, NSW; Royal North Shore Hospital, NSW; Armidale Hospital, NSW PoCoG Work life after a primary diagnosis of colorectal cancer: work disruption or life as usual? Study aims: 1. Describe transitions in employment participation following a primary diagnosis of colorectal cancer within a 12-month period compared to individuals without cancer; 2. Identify the key factors influencing work participation during or after cancer treatment compared to individuals without cancer; 3. Identify the key factors influencing time to work re-entry after cancer treatment among individuals taking work leave for their cancer treatment; 4. Investigate the influence of changes in employment participation over a 12-month period on HRQoL at time 2 among individuals with cancer compared to those without cancer; and 5. Quantify the extent of physical and cognitive limitations at work (work disability) in individuals following a primary diagnosis of colorectal cancer. PI: Louisa Gordon CIs: Brigid Lynch, Vanessa Beesley Total no. recruited to date: 239 Total no. recruited in FY 2012/13: 17 Sites: Queensland Cancer Registry, QLD PoCoG Development and trial of tailored psycho-educational resources for individuals affected by melanoma. Study aims: 1. To determine the prevalence and correlates of psychological morbidity reported by melanoma survivors at high risk of developing a new melanoma (due to multiple previous melanomas and/or multiple dysplastic naevi), compared to those at moderate risk; 2. To identify and compare the prevalence and predictors of sun protection behaviours and skin self-examination practices in these melanoma patient subgroups; and 3. To develop and pilot test a series of evidence-based psycho-educational resources, tailored to the risk status of melanoma patients. These resources will form the basis of a psychoeducational intervention aimed at promoting healthy psychological, social and behavioural adjustment, as well as improved doctor-patient communication, following melanoma diagnosis. PI: Nadine Kasparian 11

12 CIs: Bettina Meiser, Scott Menzies, Graham Mann, Phyllis Butow, Kristine Barlow-Stewart Total no. recruited to date: 316 Total no. recruited in FY 2012/13: 6 Sites: Royal Prince Alfred Hospital, NSW PoCoG A randomized controlled trial of different educational strategies for women newly diagnosed with breast cancer who are considering treatment-focused genetic testing The study aims to determine the impact and efficacy of treatment-focused genetic testing (TFGT) on a variety of psychological and decision-related outcomes, among women (aged less than 50 years) newly diagnosed with breast cancer. PI: Bettina Meiser CIs: Gillian Mitchell, Kathy Tucker, Christobel Saunders, Elizabeth Geelhoed, John Hopper, Kaaren Watts Total no. recruited to date: 128 Total no. recruited in FY 2012/13: 7 Sites: Prince of Wales Hospital, NSW; St George Hospital, NSW; Westmead Hospital, NSW; Peter MacCallum Cancer Centre, VIC; Monash Medical Centre, VIC; Royal North Shore Hospital, NSW; Cabrini Institute, VIC; Nambour General Hospital; Royal Brisbane and Women s Hospital, QLD PoCoG Communication skills training for health professionals working with women with breast cancer from culturally and linguistically diverse backgrounds The study aims to: (i) identify the CST needs of about 30 HPs working with people with cancer from CALD backgrounds; (ii) develop a one-and a half day intensive CST workshop and a separate online CST intervention targeting the training needs of such HPs; and (iii) evaluate both interventions with 50 HPs each using self-administered questionnaires to assess acceptability and relevance for both interventions. PI: Bettina Meiser CIs: David Kissane, Afaf Girgis, Phyllis Butow, Astrid Perry, Sanchia Aranda, Chris Sargeant, David Goldstein, Sandra Hale Total no. recruited to date: 23 Total no. recruited in FY 2012/13: 23 PoCoG The CHALLENGE Trial. A phase III study of the impact of a Physical Activity (PA) program on disease-free survival in patient with high risk Stage II or Stage III colon cancer: A randomised controlled trial The study aim is to determine the efficacy of Physical Activity in reducing disease recurrence in patients with localised colon cancer. The primary hypothesis is that a PA program will improve disease-free survival (DFS) in patients with resected stage II and III colon cancer who have completed adjuvant therapy. In addition, it is hypothesised that exercise can improve fatigue, quality of life (QOL), physical functioning and body composition. PI: Haryana Dhillon CIs: Janette Vardy, Stephen Clarke Total no. recruited to date: 251 Total no. recruited in FY 2012/13: 83 Sites: Concord Repatriation General Hospital, NSW; Newcastle Private Hospital, NSW; Prince of Wales Hospital, NSW; Royal Prince Alfred Hospital, NSW; Royal North Shore Hospital, NSW; Flinders Medical Centre, SA; Princess Alexandra Hospital, QLD; Royal Brisbane and Women s Hospital, QLD; Bankstown Hospital, NSW; Border Medical Oncology, NSW; Liverpool Hospital, NSW; Riverina Cancer Care Centre, NSW; Southern Highlands Cancer Centre, NSW; Royal Adelaide Hospital, SA; Tamworth Base Hospital, NSW; Armidale Hospital; Southern Highlands Private Hospital, NSW; St Vincent s Hospital Melbourne, VIC; The Queen Elizabeth Hospital Adelaide, SA; The Sydney Adventist Hospital, NSW; Royal Perth Hospital, WA; North Coast Cancer Institute, NSW PoCoG Evaluation of a web-based cognitive rehabilitation programme in cancer survivors with self-reported cognitive impairment Study aims: To evaluate a home and internet based cognitive rehabilitation programme (InSight from PositScience) in cancer survivors with solid tumours, (excluding primary brain tumours), who self report cognitive impairment 6-60 months after completion of potentially curative chemotherapy. Our primary hypothesis is that InSight will improve self-reported cognitive function. The major secondary hypotheses are that InSight can improve: (1) objective neuropsychological performance; (2) quality of life; (3) depression and anxiety; (4) stress; (5) fatigue. PI: Victoria Bray CIs: Haryana Dhillon, Janette Vardy, Melanie Bell, Melanie Price Total no. recruited to date: 204 Total no. recruited in FY 2012/13: 83 Sites: Concord Repatriation General Hospital, NSW; Royal Prince Alfred Hospital, NSW; Dubbo Base Hospital, NSW; Strathfield Private Hospital, NSW; Mater Hospital, NSW; Border Medical Oncology, NSW; Macarthur Cancer Therapy Centre, NSW; Flinders Medical Centre, SA; Wesley Medical Centre (Auchenflower), QLD; Bendigo Health, VIC; Royal Brisbane and Women s Hospital, QLD; Liverpool Hospital, NSW; Launceston General Hospital, TAS; Cairns Cancer Care Centre, QLD; Ballarat Oncology and Haematology Services, VIC; Canberra Hospital, ACT; Coffs Harbour Hospital, NSW 12

13 PoCoG PeNTAGOn: Peer Nurse support Trial to Assist women in Gynaecological Oncology Collaboration with ANZGOG The PeNTAGOn study is testing the effectiveness of a new program of support for women being treated with radiotherapy for gynaecological cancer using a randomised controlled trial. The intervention combines specialist nurse consultations with telephone peer support before, during, and after treatment, compared to current standard care alone. The support program aims to reduce women s psychological distress, psychosocial needs, psychosexual difficulties and symptom distress and improve patient preparation for treatment and quality of life. PI: Penelope Schofield CIs: Sanchia Aranda, Ilona Juraskova, Linda Mileshkin, Mei Krishnasamy, Kate White Total no. recruited to date: 167 Total no. recruited in FY 2012/13: 102 Sites: Peter MacCallum Cancer Centre, VIC; Royal Brisbane and Women s Hospital, QLD; Westmead Hospital, NSW; Royal Hospital for Women, NSW; Royal Prince Alfred Hospital, NSW; Princess Alexandra Hospital, QLD; Prince of Wales Hospital, NSW PoCoG Efficacy and safety of Gingko biloba for cognitive function and fatigue in breast cancer patients undergoing adjuvant chemotherapy This is a prospective, longitudinal, placebo-controlled randomised controlled trial evaluating the effects of the traditional Chinese herbal medicine Ginkgo biloba on cognitive dysfunction and fatigue associated with adjuvant chemotherapy in breast cancer survivors. In addition we investigate the underlying mechanisms of fatigue and cognitive impairment, and evaluate possible interactions between Gingko biloba and the common chemotherapy drugs used to treat breast cancer. Pharmacological sub-studies will obtain pharmacokinetic and pharmacodynamic information about Gingko biloba and any interaction with chemotherapy and hormonal anti-cancer treatment respectively. PI: Janette Vardy CIs: Haryana Dhillon, Melanie Bell, Andrew McLachlan, Stephen Clarke, Fran Boyle Total no. recruited to date: 88 Total no. recruited in FY 2012/13: 0 Sites: Concord Repatriation General Hospital, NSW; Royal Prince Alfred Hospital, NSW; Strathfield Private Hospital, NSW; Mater Hospital, NSW PoCoG Coping-Together: A randomised controlled trial of a self-directed coping skills intervention for patients with cancer and their partners Coping skills interventions can help patients and partners manage the physical and psychosocial challenges they confront post cancer diagnosis. However, these interventions are often led by qualified professionals, and this limits their long-term sustainability. Self-directed interventions overcome such limitations and can contribute to patient well-being. This study will test if a self-directed, coping skills intervention for couples affected by cancer, Coping-Together (CT), is efficacious in enhancing their illness adjustment at 3, 6 and 12 months post-baseline. The key component of CT is a series of six booklets, complemented by a DVD, and website. The booklets engage couples in coping skills worksheets and the DVD and website feature a qualified coping coach. PI: Afaf Girgis CIs: Sylvie Lambert, Jane Turner, Patrick McElduff, Karen Kayser, Catherine Mihalopoulos, Janelle Levesque Total no. recruited to date: 2 Total no. recruited in FY 2012/13: 2 Sites: Liverpool Hospital, NSW; Dubbo Base Hospital, NSW; Newcastle Private Hospital, NSW; Royal Prince Alfred Hospital, NSW; Private practices in NSW PoCoG ReCaPTure LiFe : A phase II cluster-randomised controlled trial of a psychological intervention to support young people with cancer and their families to make a positive transition from cancer patient to survivor. Cancer occurs at a rate 2.9 times higher in young people aged than in children, leaving many young survivors living with its ongoing negative effects (including anxiety, depression and stress). Our team has developed ReCaPTure LiFe, a 6-week online group intervention to support this vulnerable population. This randomised trial will assess the efficacy of Recapture Life in improving quality of life in 90 young survivors, compared with online peer support and a waitlist control. PI: Claire Wakefield CIs: Ursula Sansom-Daly, Richard Cohn, Richard Bryant, Phyllis Butow, Susan Sawyer Total no. recruited to date: 9 Total no. recruited in FY 2012/13: 9 Sites: Kids Cancer Centre, Sydney Children s Hospital, NSW; Peter MacCallum Cancer Centre, VIC; CanTeen Australia PoCoG Development and valuation of cancer-specific multi-attribute health states for use in economic evaluation (MAUCa) The overarching aim of this study is to develop a health-state classification system to enable the incorporation of cancer-specific healthrelated quality of life (HRQL) information into economic analysis of emerging cancer therapies. The study will employ sophisticated statistical techniques and expert clinical judgment to select the most appropriate questions from the two most commonly used cancerspecific HRQL questionnaires for inclusion in the classification system. Existing data sets containing data from these two HRQL questionnaires will be collected from a variety of international sources and subjected to a rigorous selection process, based on statistical and clinical criteria. PI: Madeleine King CIs: Rosalie Viney, Julie Pallant, Monika Janda, Peter Grimison Total no. recruited to date: 181 Total no. recruited in FY 2012/13: 152 Sites: Royal Prince Alfred Hospital, NSW; Tamworth Base Hospital, NSW; Armidale Hospital; Greenslopes Private Hospital, QLD; Dubbo Base Hospital, NSW 13

14 PoCoG Self-reported evaluation of the adverse effects of Dexamethasone (SEED) Collaboration with COGNO The primary aim of the study is to assess a patient and caregiver reported questionnaire: Dexamethasone Symptom Questionnaire Chronic (DSQ Chronic) (patient and caregiver versions), and to generate pilot data on the incidence and severity of symptoms and side effects that may be due to dexamethasone from the perspective patients and their caregivers. The study will also assess the frequency of side effects that may be attributable to dexamethasone as rated by the treating clinician. We will then be able to compare patient, caregiver and clinician perspectives. The longer term goal is to develop studies exploring steroid alternatives or agents which allow reduction of dexamethasone. Patient and caregiver reported measures would be important outcomes in such a study hence the need for questionnaires that have been tested previously. PI: Meera Agar CIs: Elizabeth Hovey, Madeleine King, Janette Vardy, David Currow, Eng-Siew Koh, Chris Brown, Kathleen Scott, Melanie Lovell, Richard Chye, Katherine Clark Total no. recruited to date: 59 Total no. recruited in FY 2012/13: 36 Sites: Calvary Hospital Sydney, NSW; Sacred Heart Hospice, NSW; Braeside Hospital Sydney, NSW; St Vincent s Hospital, Sydney NSW; Greenwich Hospital, Sydney, NSW PoCoG A decision aid to promote informed consent and recruitment to the RAVES trial for men with high risk prostate cancer: A randomised controlled trial. The primary aim of the study is to determine whether DA provision improves participant accrual and reduce dropout rates for the RAVES trial. The secondary aims are to evaluate whether the DA will reduce decisional conflict and regret; increase knowledge about their options and satisfaction with the decision to participate or not in the trial, without increasing anxiety. PI: Phyllis Butow CIs: Sandra Turner, Andrew Kneebone, Ilona Juraskova, Melanie Bell, Henry Woo, Puma Sundaresan Total no. recruited to date: 50 Total no. recruited in FY 2012/13: 28 Sites: SAN Clinic, NSW; Royal North Shore Hospital private rooms, NSW; Australian Urology Associates; Macarthur Urology Centre, NSW; Concord Repatriation General Hospital, NSW; Peter Macallum Cancer Centre, VIC; Royal North Shore Hospital, NSW; Royal Prince Alfred Hospital, NSW; Westmead Hospital, NSW PoCoG Internet-based behaviour change for sleepless cancer patients: How common is sleep disturbance in Australian cancer survivors and are computer-based interventions feasible This study aims determine the feasibility of conducting a randomised controlled trial of an internet-delivered intervention for sleep disturbance in a general cancer population by assessing the proportion of patients attending outpatient clinics who would meet study eligibility criteria (including having internet access) and who would be interested in receiving assistance in managing sleep difficulties via the internet. A second aim is to assess the efficacy of a sleep hygiene information intervention in aiding people with sleep disturbance. PI: Haryana Dhillon CIs: Melanie Price, Laura Kirsten, Paul Katris, Elizabeth Eakin Total no. recruited to date: 70 Total no. recruited in FY 2012/13: 11 Sites: Concord Repatriation General Hospital, NSW; Royal Prince Alfred Hospital, NSW; Sutherland Hospital, NSW PoCoG Reducing Fear of Cancer Recurrence in breast and colorectal cancer survivors; A cluster randomised controlled trial This study aims to assess the efficacy of a novel intervention (Conquer Fear) to help cancer survivors manage fear of cancer recurrence. The intervention is a 5-session individual psychologist-delivered therapy programme based on two theoretical models: the Self-Regulation of Executive Function (S-REF) model of emotional disorder and a mindfulness framework. It includes components of meta-cognitive therapy, Attention Training Technique (ATT) and detached mindfulness. PI: Phyllis Butow CIs: Belinda Thewes, Jane Turner, Jemma Gilchrist, Jane Beith, Afaf Girgis, Louise Sharpe, Melanie Bell, Catherine Mihalopoulos Total no. recruited to date: 28 Total no. recruited in FY 2012/13: 28 Sites: Royal Prince Alfred Hospital, NSW; Prince of Wales Hospital, NSW; Flinders Medical Centre, SA; Royal Brisbane and Women s Hospital, QLD; St George Hospital, NSW; Macarthur Cancer Therapy Centre, NSW; Concord Repatriation General Hospital, NSW; Cancer Care Service, Toowoomba, QLD; Royal Perth Hospital, Breast Cancer Clinical Psychology Service, WA PoCoG Randomised controlled trial of a telephone-delivered weight loss intervention for overweight and obese women following treatment for breast cancer The purpose of this study is to evaluate an 18 month telephone-delivered weight loss intervention for overweight and obese women who have recently completed treatment for stage I-III breast cancer. The program will be evaluated on its ability to promote weight loss, body composition, improvements in physical activity, diet, body composition, cardio-metabolic biomarkers and patient-reported outcomes (quality of life, body image). The evaluation will be based on data collected at the start of the program, after 6-, 18- and 24-months, from women randomly allocated to receive either a telephone-delivered weight loss program (intervention) or usual care. The program will also be evaluated on its cost effectiveness. PI: Marina Reeves CIs: Elizabeth Eakin, Ingrid Hickman, Nicole McCarthy, Theo Vos, Eliza Whiteside Total no. recruited to date: 43 Total no. recruited in FY 2012/13: Sites: Royal Brisbane and Women s Hospital, QLD; Redcliffe Hospital, QLD; Mater Adult Hospital, QLD; Mater Private Hospital, QLD; Greenslopes Private Hospital, QLD; North West Private Hospital, QLD

15 PoCoG The development and piloting of an intervention to promote adherence to Active Surveillance Using qualitative interviews, participants will be interviewed by telephone to explore the reasons and motivations associated with treatment decisions. The focus of these interviews will be to understand the psychosocial issues influencing men s uptake of, and ongoing adherence to Active Surveillance PI: Penelope Schofield CIs: Sue Burney, Jane Fletcher, Addie Wootten, Declan Murphy, Mark Frydenberg, Joanna Brooker, Jane Fletcher, Clare O Callaghan Total no. recruited to date: 35 Total no. recruited in FY 2012/13: 35 Sites: Peter Macallum Cancer Centre, VIC; Cabrini Hospital, VIC PoCoG Describing oncology social work practice and research There is a dearth of peer reviewed literature addressing oncology social work practice. The same can be stated for research initiatives involving oncology social workers. This survey aims to profile social work areas of practice in oncology settings in Australia and social workers involvement in psychosocial cancer research, in order to better understand the scope of oncology social work practice, thereby informing future psychosocial intervention research involving social workers. PI: Rosalie Pockett CIs: Kim Hobbs, Monika Dzidowska, Michelle Peate Total no. recruited to date: 156 Total no. recruited in FY 2012/13: 156 Sites: Psycho-oncology Co-operative Research Group (PoCoG); Oncology Social Work Australia (OSWA); Australian Association of Social Workers (AASW) PoCoG Assessing and navigating the unmet supportive care needs of Indigenous cancer patients This project aims to investigate the supportive care needs of adult Indigenous cancer patients in the course of their cancer journey and to examine how Indigenous cancer patients supportive care needs may change over time; The project will also pilot Indigenous Patient Navigators to examine: (i) the role of the Navigator in response to the specific identified supportive care needs of Indigenous patients; (ii) the practicality of having an Indigenous Patient Navigator operating in the existing cancer support services system. PI: Patricia Valery CIs: Vanessa Beesley, Gail Garvey, Anna Hawkes, Jacinta Elston Total no. recruited to date: 254 Total no. recruited in FY 2012/13: 254 Sites: Royal Brisbane and Women s Hospital, QLD; Princess Alexandra Hospital, QLD PoCoG Feasibility study of an integrated, patient-centred psychosocial care model for patients with urological and head and neck cancers This study aims to develop and test the feasibility of a patient-centred integrated model of psychosocial care for people receiving treatment for urological or head and neck (H&N) cancers. Specifically, the research will 1) Develop a model which integrates psychosocial care into routine clinical practice, through training of frontline staff and establishing a specialised psycho-oncology service to facilitate routine assessment, triage and management of cancer patients individual physical, psychological and social concerns during active treatment and at follow-up, with integration of rural services; 2) Assess the feasibility of introducing this integrated care model; and 3) Assess the cost and acceptability of the model to patients and health care professionals. PI: Afaf Girgis CIs: Brian Kelly Total no. recruited to date: 107 Total no. recruited in FY 2012/13: 107 Sites: John Hunter Hospital, Newcastle, NSW PoCoG Women s preferences for managing their risk of developing breast cancer The aims of this study are: 1) To discover how women at moderate and high risk of breast cancer weigh up the benefits (reduction in breast cancer risk) versus the costs (side effects and body changes) of tablets to reduce exposure to oestrogen; and 2) To identify the demographic and psychological factors that influence how women make these decisions. PI: Phyllis Butow CIs: Kelly-Anne Phillips, Dr Kathy Tucker, Prunella Brunman, Melanie Bell, Angelique Ralph, Brittany Agar Total no. recruited to date: 103 Total no. recruited in FY 2012/13: 103 Sites: Peter MacCallum Cancer Centre, VIC; Prince of Wales Hospital, NSW PoCoG Survivorship after cancer: Resources for cancer survivors in CALD communities In collaboration with survivors, carers and informed community representatives from Chinese and Greek speaking backgrounds, this project aims to develop culturally- appropriate information about life after cancer (cancer survivorship) for people from Chinese and Greek- speaking backgrounds. PI: Michael Jefford CIs: Penelope Schofield, Jo Phipps-Nelson, Phyllis Butow, Melanie Price, Dorothy Yu, Amanda Horden, Anna Epifanio, Emma Croager Total no. recruited to date: 19 Total no. recruited in FY 2012/13: 19 Sites: Chinese support group (CanCare); Peter MacCallum Cancer Centre, VIC 15

16 PROFILES OF ENORSED STUDIES NOT YET OPEN TO RECRUITMENT IN THE 2012/2013 FINANCIAL YEAR PoCoG Reducing disparity in outcomes for immigrants with cancer; a randomised controlled trial of a culturally targeted supportive care intervention: CALD CONNECT This project is a multi-centre randomised controlled trial aiming to ascertain the effectiveness of a culturally appropriate, centralised, supportive care telephone intervention for Chinese and Arabic-speaking patients starting treatment for newly diagnosed or recurrent cancer in improving patient QOL in the first 3 months after diagnosis. More specifically this RCT will ascertain the effectiveness of this intervention in: i) reducing patients unmet supportive care needs, ii) reducing psychological distress (anxiety and depression) (iii) improving coordination of care and iv) reducing unplanned health services utilisation, (v) the longer term impact of the intervention (six months). PI: Phyllis Butow CIs: Jane Young, David Goldstein, Sanchia Aranda, Weng Ng, Melanie Bell, Joanne Shaw PoCoG Development and Pilot Testing of an Evidence-Based, Tailored, Computerised Risk Assessment and Decision Support Tool to Facilitate Discussions about Breast Cancer Prevention and Screening Measures This study aims to develop and pilot an evidence-based, personalised, computerised tool to help GPs, breast surgeons and Family Cancer Centre clinicians to easily and accurately assess an individual woman s breast cancer (BC) risk, and to effectively convey tailored information about the risks and benefits of the relevant risk management interventions for that individual. Specifically the study aims to: i) assess the needs and preferences of clinician and patient end users regarding the format and content of the proposed iprevent tool; ii) develop a prototype of the iprevent tool; iii) pilot the prototype of iprevent and iv) develop a final version of iprevent which can subsequently be tested in a much larger study in primary care and specialist settings. PI: Kelly-Anne Phillips CIs: Ian Collins, Phyllis Butow, Jon Emery, Louise Keogh, Bruce Mann, John Hopper, Alison Trainor PoCoG Advance care planning in incurable cancer patients with disease progression on first line chemotherapy: a randomised trial This RCT is aiming to evaluate a nurse or allied health professional-delivered intervention to facilitate patients and doctors in Advance Care Planning (ACP). Patients will be randomized to standard care, or standard care plus meeting with the ACP facilitator. In this intervention the ACP facilitator assists the patient and their family to reflect on the patient s goals, values and beliefs, and to discuss their future choices about health care including further anticancer treatments, supportive care measures, and End of Life (EOL). PI: Martin Tattersall CIs: William Silvester, Josephine Clayton, Karen Detering, Jane Hall, Phyllis Butow, Belinda Kiely, Jonathan Cebon, Stephen Clarke, Melanie Bell PoCoG A phase II randomised controlled trial of consultation audio-recordings plus question prompt lists for people with cancer from Greek, Chinese or Arabic background. This study will involve the adaptation and pilot testing of a communication aid package for CALD patients with a new diagnosis of cancer. The proposed communication aid package is considered a complex intervention. Therefore the Medical Research Council (MRC) methodological framework for complex interventions will be used to guide the design and evaluation of this study. Specifically, the purpose of this phase I study will be to operationalise and optimise the proposed intervention; establish the acceptability of the program amongst the target population; and ensure the suitability of the outcome measures. Results from this phase I study will be used to inform the design of a phase II trial which will to estimate potential effect sizes and coefficient of variation in order to finalise the design of a phase III trial. PI: Penelope Schofield CIs: Phyllis Butow, Thomas Hack, Martin Tattersall, Sandra Hale, Michael Jefford, Alison Hocking PoCoG Clinician's consultation to introduce cancer survivorship for lymphoma The study is a cluster randomised, multi-site CST intervention trial involving 36 physicians and 288 nested patients, which will compare the efficacy of a survivorship-focussed consultation (intervention arm) with a rehabilitation-focussed consultation (control arm) for their capacity to improve knowledge, promote adherence to health recommendations, achieve satisfaction with care, reduce worry and improve quality of life. The primary outcome for clinicians will be uptake and utilisation of survivorship-focussed communication skills post CST intervention and maintenance of these skills in the clinical setting subsequently. The primary outcome for patients will be growth in knowledge about lymphoma survivorship. PI: David Kissane CIs: Phyllis Butow, Stephen Opat, Mark Hertzberg 16

17 PoCoG Examining the feasibility and acceptability of referring breast cancer survivors to the NSW Get Healthy Service - a telephone-delivered program targeting physical activity, healthy diet and weight loss This research study seeks to look at the best ways of supporting women who have completed breast cancer treatment within the last 12 months to make lifestyle changes (increasing physical activity, improving eating habits, and achieving and maintaining a healthy weight) to promote longer term health and wellbeing. Participants will receive 6 months of telephone counselling from the NSW Get Healthy Information and Coaching Service (GHS; a telephone counselling program for physical activity, healthy eating and weight loss). The aim of the study is to evaluate the feasibility and acceptability of the GHS for women within 12 months of end of treatment for stage I-III breast cancer. PI: Sheleigh Lawler CIs: Meagan Brennan, Elizabeth Eakin, Marina Reeves, Ana Goode, Rosemary Winter, Bronwyn Chalmers PoCoG Test-E; Development and phase I testing of a web-based intervention to reduce anxiety and depression in survivors of testicular cancer The aim of this project is to adapt an existing website developed for men with prostate cancer, which uses proven methods to reduce anxiety and depression, to men with testicular cancer and pilot test the website in a group of survivors. PI: Phyllis Butow CIs: Ian Olver, Peter Grimison, Allan Smith, Britt Klein, Addie Wootten PoCoG Rekindle sexuality after cancer: Development and testing of a novel web-based psycho-educational resource for both survivors and their partners This study involves the development and testing a web-based intervention to address sexual concerns amongst individuals with all cancer types. The proposed website will provide a self-led, web-based intervention in the privacy of survivors and partners homes. Rekindle has the potential to serve as a model for providing supportive care remotely with broad reach, not only with respect to geographic location, but also cancer type and level of sexual difficulties. PI: Catalina Lawsin CIs: Phyllis Butow, Ilona Juraskova, Kim Hobbs, Sylvie Lambert, Judy Kay, Kevin McGeechan, Frances Boyle, Lori Brotto, Lee Ritterband PoCoG ENHANCES study (Enhancing Head and neck CancEr patients Experiences of Survivorship) Collaboration with ALTG This study will assess a model of survivorship care to improve quality of life in patients with head and neck (H&N) cancer. This will be achieved through a structured Intervention for patients who have completed treatment for H&N cancer, based on emerging conceptualisations of chronic disease self-management. The structured Intervention will be delivered by oncology nurses who participate in focused training, skill development and clinical supervision. The study will also assess the feasibility and cost impact of delivering this Intervention in routine clinical care. PI: Jane Turner CIs: Patsy Yates, Liz Kenny, Louisa Gordon, Brian Burmeister, Damien Thomson, Brett Hughes, Alexandra McCarthy, Caroline Perry, Raymond Chan PoCoG Cognitive rehabilitation for breast cancer survivors with perceived cognitive impairment This study will evaluate two cognitive rehabilitation programmes in localised breast cancer survivors with perceived cognitive dysfunction after chemotherapy: 1) a structured neurocognitive learning programme (Attention Process Training [APT], aimed at improving underlying cognitive deficit) and 2) a systematic teaching of strategies to compensate for the functional impact of cognitive deficits (Compensatory Strategy Training [CST]). PI: Janette Vardy CIs: Haryana Dhillon, Melanie Bell, Melanie Price, Lucette Cysique PoCoG An observational study of health-related quality of life in people with malignant mesothelioma This study will provide novel information about the course of HQoL in different groups of people with malignant mesothelioma throughout the disease trajectory. It will provide information regarding their supportive care needs and other psychological factors that contribute to HQoL outcomes. PI: Janette Vardy CIs: Steven Kao, Haryana Dhillon, Jason Fowler, Melanie Price, Anne Warby, Cindy Tan, Jocelyn McLean PoCoG Phase I pilot of a Mindfulness-Based Stress Reduction intervention (MBSR) for head and neck cancer patients receiving treatment of curative intent This study is a Phase I pilot to evaluate whether MBSR is suitable for use in head and neck cancer patients. The primary aims of this study are to assess the feasibility and acceptability of MBSR therapy and further explore participant s experiences, both positive and negative, of the intervention through a post-intervention semi-structured interview. PI: Jeremy Couper CIs: Annabel Pollard, David Castle 17

18 PoCoG Improving communication and psychological wellbeing among women undergoing BRCA1/2 genetic testing and their male partners This study will evaluate a web-based intervention that targets the support needs of women undergoing genetic testing for breast and/ or ovarian cancer risk. The intervention will provide information, guidance and support to the women s male support partners. It is hypothesized that by improving the man s coping ability and his ability to provide support to the tested woman, that she will more readily discuss genetic testing concerns, be better supported and feel less distressed. PI: Kerry Sherman CIs: Nadine Kasparian, Phyllis Butow, Kathy Tucker, Judy Kirk, Rachael Morton PoCoG Development and validation of a symptom-specific patient-reported outcome measure (PROM) for use in patients undergoing parotidectomy and adjuvant therapy for malignant disease. Cancers affecting the parotid salivary gland (a gland beneath the cheek and in front of the ear) are relatively uncommon worldwide but occur with greatly increased frequency in Australia. Treatment often requires extensive surgery to the face and neck plus radiation therapy and sometimes chemotherapy. These treatments, while relatively effective, are associated with significant complications, including pronounced facial sweating when eating, facial paralysis, facial deformity, neck stiffness, chronic pain, reduction/loss of salivation and altered taste sensation. This study will develop and validate a self-report questionnaire to assess patients experience of these symptoms, with the goal of improving patient care and quality of life. PI: Mitchell Lee CIs: Madeline King, Jonathan Clark, Timothy Eviston, James Wykes PoCoG Research study to learn more about the potential benefits and challenges of a new supportive care program for people affected by melanoma This study will evaluate whether a psycho-educational booklet tailored for melanoma survivors, and individual, telephone-based psychological support, will reduce fear of melanoma returning (either as a recurrence or a new primary melanoma). PI: Anne Cust CIs: Nadine Kasparian, Mbathio Dieng, Rachael Morton, Graham Mann, Scott Menzies, Daniel Costa Study recruitment sites for studies open to recruitment in 2012 / 2013 Number of studies 18

19 CONCEPTS DEVELOPED DURING CDWs IN THE 2012/2013 FINANCIAL YEAR CDW Does tailoring of a self-directed coping skills training resource in line with concerns and information-seeking preferences increase knowledge and self-efficacy of couples facing cancer? Evidence from a RCT PI: Dr Sylvie Lambert CIs: Kerry Sherman, Nadine Kasparian, Katherine Tucker CDW A Prospective Cohort Study Investigating Psychosocial Risk Factors for Families at Key Points in Treatment Protocols for Children s Leukaemia PI: Cherie Lowe CIs: Amanda Carter, Justine Fitzpatrick, Andrew Hallahan CDW Access to cancer care treatment & services: impact on treatment decisions & health service use PI: Dr Elica Ristevski CIs: Melanie Regan, Matthew McGrail, Leigh Kinsman, Sue Burney,Jane Fletcher, Phyllis Butow CDW Test-e: An Internet intervention to reduce anxiety and depression in testicular cancer survivors PI: Prof. Madeleine King CIs: Phyllis Butow, Kathleen Griffiths, Peter Grimison, Kylie Bennett, Allan Smith Collaboration: PoCoG-ANZUP CDW Combining patient navigation, cancer education and communication coaching to improve Indigenous cancer patients experiences through their cancer journey: a RCT. PI: A/Prof. Patricia Valery CIs: Gail Garvey, Euan Walpole, Jennifer Martin, Sabe Sabesan CDW Reducing the unmet supportive care needs of primary brain tumour patients PI: Dr Danette Langbecker CI: Patsy Yates CDW The development and evaluation of Australian quality indicators for psychosocial cancer care PI: Dr Nicole Rankin CIs: Sallie Anne Pearson, Phyllis Butow, Kate White, Tim Shaw CDW Implementing psycho-educational interventions for Australians with, or at high risk of developing, melanoma PI: Dr Nadine Kasparian CIs: Mbathio Dieng, Anne Cust, Graham Mann, Scott Menzies, Phyllis Butow, Rachael Morton, Daniel Costa CDW Improving supportive care in melanoma PI: Prof. Frances Boyle CIs: Phyllis Butow, Mandy O Reilly, Robyn Saw, Catalina Lawsin, Tim Shaw, Graham Mann, Tracy Robinson, Julie Winstanley CDW Exploring the impact of neoadjuvant chemotherapy on women with operable breast cancer and potential generalizability to melanoma PI: Dr Nicholas Zdenkowski CIs: Fran Boyle, Phyllis Butow 19

20 PoCoG PUBLICATIONS IN THE 2012/2013 FINANCIAL YEAR JOURNAL ARTICLES Butow P, Bell M, Smith A, Fardell J, Thewes B, Turner J, Gilchrist J, Beith J, Girgis A, Sharpe L, Shih S, Mihalopoulos C, members of the Conquer Fear Authorship Group. Conquer fear: protocol of a randomised controlled trial of a psychological intervention to reduce fear of cancer recurrence. BMC Cancer 2013; 13(1): 201. Butow PN, Aldridge L, Bell ML, Sze M, Eisenbruch M, Jefford M, Schofield P, Girgis A, King M. Duggal-Beri P, McGrane J, Goldstein D, Inferior health-related quality of life and psychological wellbeing in immigrant cancer survivors: a population-based study. European Journal of Cancer 2013; 49(8): Butow PN, Phillips F, Schweder J, White K, Underhill C, Goldstein D on behalf of the Clinical Oncological Society of Australia. Psychosocial wellbeing and supportive care needs of cancer patients living in urban and rural/regional areas: A systematic review. Supportive Care in Cancer 2012; 20(1): Dhillon H, van der Ploeg H, Bell ML, Boyer M, Clarke S, Vardy J. The Impact of Physical Activity on Fatigue and Quality of Life in Lung Cancer Patients: a randomised controlled trial protocol. BMC Cancer 2012: 572 doi: / Kasparian NA. Psychological stress and melanoma: Are we meeting our patients psychological needs? Clinics in Dermatology 2013; 31(1): McLoone JK, Watts K, Menzies SW, Meiser B, Butow PN, Kasparian NA. When the risks are high: Psychological adjustment among melanoma survivors at high risk of developing new primary disease. Qualitative Health Research 2012; 22(8): Sansom-Daly UM, Wakefield CE, Bryant RA, Butow P, Sawyer S, Patterson P, Anazodo A, Thompson K, and Cohn RJ. Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: A multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer 2012; 12: 339. doi: / Schofield P, Juraskova I, Bergin R, Gough K, Mileshkin L, Krishnasamy M, White K, Bernshaw D, Penberthy S, Aranda S. A nurse and peer led support program to assist women in gynaecological oncology, the PeNTAGOn study (Peer and Nurse support Trial to Assist women in Gynaecological Oncology): protocol for a randomised controlled trial. Trials 2013; 14:39. DOI: / (online publication, 11 February 2013 Watts KJ, Meiser B, Mitchell G, Kirk J, Saunders C, Peate M, Duffy J, Kelly P, Gleeson M, Barlow-Stewart K, Rahman B, Friedlander M, Tucker K. How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer. BMC Cancer 2012; 12:320. DOI: / Bernardes CM, Whop LJ, Gail Garvey G, Valery PC. Health service utilization by indigenous cancer patients in Queensland: a descriptive study. International Journal for Equity in Health 2012; 11:57. ORAL AND POSTER PRESENTATIONS Meiser B, Rahman B, Watts KJ, Gleeson M, Saunders C, Mitchell G, Barlow-Stewart K, Lobb EA, Kirk J, Tucker K. Evaluation of the efficacy of two models of delivering information about treatment-focused genetic testing among young women newly diagnosed with breast cancer. European Meeting on Psychosocial Aspects of Genetics. Nuremburg, Germany. June Thewes B, Bell M, Smith A, Fardell JE, Turner J, Butow P, and the PoCoG FCR Working Group. Conquer Fear: The development and pilot testing of a novel psychological treatment for fear of cancer recurrence. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3):253. Bernardes CM, Valery PC, Garvey G. Are Indigenous Australians interested in family history and genetic predisposition to cancer? A report of cancer patients in Queensland. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): 158. Booth CM, Courneya KS, Vardy JL, Jonker DJ, Gill S, Brundage M, van der Ploeg H, Dhillon HM, O Brien P, Goddard E, Pollak MN, Friedenreich C, Tu D, Wong R, Meyer RM. A phase III study of the impact of a physical activity program on disease-free survival in patients with high-risk stage II or stage III colon cancer: A randomized controlled trial (NCIC CTG CO.21). American Society of Clinical Oncology Annual Meeting. Journal of Clinical Oncology 2013; (suppl) TPS3647. Dhillon H, Price M, Wikaire E, Vardy J. Caring for thoracic cancer caregivers: exploring psychological and supportive care needs. Australian Lung Cancer Conference. Adelaide, SA. August Dhillon H, Price M, Wikaire E, Vardy J. Caring for thoracic cancer caregivers: exploring psychological and supportive care needs. Sydney Cancer Conference. Sydney, NSW. September

21 Dhillon H, Turner J, Kabourakis M, van der Ploeg HP, Vardy JL. The impact of physical activity on fatigue and quality of life in lung cancer patients (PAL Study): a qualitative exploration of participant experience. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): 342 Garvey, G. Beesley, V. Hawkes, A. Janda. M. Bernardes, CM. Elston, J. Valery, PC. What are the supportive care needs of Indigenous cancer patients in Queensland? IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): 212. Kasparian NA, McLoone JK, Meiser B, Butow P, Barlow-Stewart K, Charles M, Mann G, Menzies S. Living beneath the sword of Damocles : Perceptions of risk and fears of cancer recurrence among Australian melanoma survivors at high or moderate risk of developing new primary disease. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): 236 Kasparian NA, McLoone JK, Meiser B, Butow P, Barlow-Stewart K, Mann G, Dieng M, Menzies S. Psychological care for people at high risk of melanoma: Development and pilot testing of a psycho-educational intervention. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): 276. Pockett R, Hobbs K, Dzidowska M, Peate M. Describing oncology social work and practice in Australia: What is the current state of play? IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): Smith A, King M, Butow P, Olver I, et al. Losing your marble(s): A cross-sectional study of psychosocial outcomes in Australian testicular cancer survivors. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): Valery PC, Beesley VL, Hawkes Al, Bernardes C, Elston J, Garvey G. Unmet supportive care needs of Indigenous cancer patients in Queensland: preliminary results IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3): 215. Dieng M, McLoone JK, Meiser B, Butow P, Barlow-Stewart K, Mann G, Menzies S, Cust A, Kasparian N. Development and pilot testing of a psycho-educational intervention for Australians at high risk of melanoma. Sydney Cancer Conference. Sydney, NSW. September Pockett R, Hobbs K, Dzidowska M, Peate M, Baylock B. Working collaboratively to progress oncology social work research. Effecting Change, 8th Oncology Social Work Australia Conference Canberra, ACT. April Ming Sze, Phyllis Butow, Melanie Bell, David Goldstein, Madeleine King, Michael Jefford, Afaf Girgis, Maurice Eisenbruch, Lisa Vaccaro, Skye Dong. Psychosocial outcomes in first-generation immigrant cancer patients in Australia. IPOS 14th World Congress and COSA 39th Annual Scientific Meeting. Brisbane, Australia. November Asia Pacific Journal of Clinical Oncology 2012; 8(Suppl 3):

22 EXECUTIVE OFFICE Dr Melanie Price Executive Director Ms Monika Dzidowska Executive Officer Dr Joanne Shaw Executive Officer Dr Joseph Coll Biostatistician Mr Ireneusz Golka Communications Officer CONTACT US PoCoG Mailing Address and Office Location: School of Psychology Transient Building (F12) The University of Sydney, NSW 2006 Australia General Enquiries Phone: Fax: pocog.office@sydney.edu.au Publication number: EO-AR