YEAR IN REVIEW 2020 - Peter MacCallum Cancer Centre
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in touch News from the Australian Cancer Survivorship Centre January 2021 YEAR IN REVIEW 2020 At the 3rd Victorian Cancer Survivorship Conference. From left: Prof Deb Mayer, Helana Kelly, Kyleigh Smith, Anton Enus, Prof Jon Emery, Prof Michael Jefford, Michelle Barrett. Message from the Director The Australian Cancer Survivorship 2020 was a challenging year for many. Centre (ACSC) aims to improve COVID-19 continues to affect many outcomes for people affected by aspects of our lives, including the way cancer. We work with clinical providers we deliver and receive healthcare. We (medical, nursing and allied health) thank our colleagues across all sectors of at Peter MacCallum Cancer Centre healthcare and the community for your (Peter Mac) and throughout Victoria, ongoing work to support cancer survivors as well as survivors and a range of and their families. We look forward to organisations, to enable improved care continuing to work with you in 2021. for survivors, their families and carers. We invite you to read our ‘Year in review’, which highlights our many achievements We are very grateful for ongoing funding in 2020, including celebrating our 10th from Peter Mac and the Victorian birthday and co-hosting the 3rd Victorian Government to support our work. Cancer Survivorship Conference. The ACSC has a statewide role in To learn more about the ACSC or to the development of education and explore opportunities to collaborate, resources for both survivors and health visit our website petermac.org/ professionals. We provide advice cancersurvivorship, email contactacsc@ regarding models of care, and while petermac.org or phone +61 3 8559 6220. our focus is not primarily on research, we strongly support and collaborate Professor Michael Jefford in research relevant to survivorship. Please consider the environment before printing me. Page 1
in touch News from the Australian Cancer Survivorship Centre January 2021 10-year birthday The ACSC celebrated 10 years of service in 2020! Since 2010, the ACSC has been providing information and support to survivors and carers, education and training for health professionals, and cancer survivorship leadership and guidance. We are immensely proud of our achievements to date, and grateful for your support and input into our work. ACHIEVEMENTS IN 2020 On the following pages, we summarise our 2020 achievements under six headings that reflect our refreshed strategic plan. 1. Provide information and support for cancer survivors and carers Throughout 2020, we continued to Resources for culturally and Resources for young people develop and provide information and support for cancer survivors and carers. linguistically diverse groups The ACSC proudly launched the The ACSC partnered with the Western ‘Adolescents and young adults’ page, A principal means of delivering providing resources and information and Central Melbourne Integrated information for survivors is the ACSC for young survivors. The information Cancer Service (WCMICS) to develop new website petermac.org/cancersurvivorship, was endorsed by the Victorian and resources for culturally and linguistically which attracted many readers in 2020. Tasmanian Youth Cancer Action Board. diverse groups. This included translating ‘Breast cancer: follow-up of survivors of the written resource ‘How to prepare for breast cancer‘ was the most frequently Webinars check-ups’ into six languages (traditional downloaded resource, with more Chinese, simple Chinese, Greek, Italian, In November, we presented the Cancer than 170 downloads. We also added Arabic, Vietnamese) and developing Wellness Program (previously known information to the website about an audio-recording ‘On the road to as Wellness and Life after Cancer) – an ‘Self-management‘, promoting the recovery’ in six languages (Arabic, initiative of Cancer Council Victoria. value of taking control of one’s own Italian, Greek, Vietnamese, Tagalog, Typically provided as a full-day, face- health by acquiring information and Hindi). A promotional video was also to-face event, the 90-minute webinar skills that help survivors cope with created to support health professionals was attended by 38 cancer survivors cancer treatment and follow-up. to effectively deliver cancer survivorship among a total of 51 attendees. Videos on information to people from culturally key topics are available to view here. Common Survivorship Issues and linguistically diverse backgrounds. Directory We also proudly contributed to several We thank WCMICS for their funding consumer-focused webinars, including This directory petermac.org/survdirect is and support of this important project. those convened by the Australia and a central hub for commonly experienced To access these resources, please New Zealand Sarcoma Association cancer survivorship issues, offering visit petermac.org/languages and Melanoma Patients Australia. information and tools to support cancer survivors. In 2020 the directory was expanded to include three new topics, bringing the total number of topics to 13. The directory was accessed 6526 times, with cancer-related fatigue being the most widely accessed issue. Please consider the environment before printing me. Page 2
in touch News from the Australian Cancer Survivorship Centre January 2021 2. Provide education and training for health professionals The ACSC continued to provide learning opportunities and develop resources for health professionals throughout 2020. Cancer Survivorship course – eviQ We re-launched our revamped, free online education for health professionals: ‘Cancer survivorship’. Hosted on eviQ Education (a Cancer Institute NSW site), this six-module introductory course is relevant for all health professionals interested or working in cancer survivorship. The course includes the most up-to-date evidence, explores the health needs of cancer survivors, and presents tools, guidelines, frameworks Panelists at the allied health survivorship webinar. From top left: Helen Gilby, Dr Fiona Lynch, Dr Nicole Kiss, Prof Ray Chan, Andrew Murnane, Denise Beovich, Helana Kelly, Lauren Atkins. and strategies to provide optimal cancer survivorship care. Each module Delivering Innovative Cancer Association, the Victorian Comprehensive can be completed individually. Cancer Centre (VCCC) and COSA to Survivorship Care Please visit eviQ Education today and deliver a survivorship-focused webinar provide your feedback so we can continue In December, 54 people attended the for primary care health professionals, to improve this important resource. ‘Delivering innovative cancer survivorship with 117 people in attendance, a further care’ webinar. This free, virtual course 186 have watched the recording, was open to health professionals and which you can access here. Module 1 included key survivorship issues including Survivorship fundamentals We were also pleased to be panellists the common experiences of cancer Cancer Survivorship at two Melbourne Metropolitan survivors, promotion of wellness and Primary Health Network webinars self-management, and motivational Module 2 on implementing Optimal Care interviewing techniques. Typically run Models of survivorship care Pathways and a panellist at the face to face, this modified event still Cancer Survivorship Murray Primary Health Network received excellent feedback, such as: webinar exploring the same topic. ‘Thank you so much for this wonderful Module 3 session, it is very beneficial for our daily A multidisciplinary approach nursing practice! Much appreciated!‘ Cancer Survivorship Webinars Module 4 In August, the ACSC partnered with Survivorship care plans Cancer Council Victoria and the Clinical Cancer Survivorship Oncology Society of Australia (COSA) to present a free, allied health cancer Module 5 survivorship webinar on ‘The important Self-management Cancer Survivorship role allied health plays in the care of cancer patients post-treatment – an Peter Mac award interactive case review’. Three hundred Module 6 and twenty-two health professionals The ACSC received a 2020 Peter Wellbeing watched the webinar live, and close Mac Award in the category to 200 have subsequently watched the ‘World-class cancer education’. Cancer Survivorship recording, which you can access here. Throughout 2020, the ACSC We also partnered with the Royal team delivered over one dozen Australian College of General high-quality education initiatives, Practitioners, Cancer Council Victoria, the providing education to more Australian Primary Health Care Nurses than 1000 health professionals. Please consider the environment before printing me. Page 3
in touch News from the Australian Cancer Survivorship Centre January 2021 3. Support improved models of survivorship care Electronic medical record and Following R1, six criteria were removed, Online survivorship care plan six were added, and 18 criteria were survivorship care revised based on free-text comments. generator Peter Mac, Melbourne Health and the Following R2, 30 quality criteria were mycareplan.org.au is an online Royal Women’s hospitals all moved retained (the framework). These included survivorship care plan generator that to the Epic electronic medical record presence of a policy for the provision was launched in 2019. 2020 saw 1722 (EMR) system in August 2020. The ACSC of survivorship care, having processes users, with 358 care plans created. worked closely with clinical services and for the assessment of emotional, Successful funding from the Victorian the EMR team to develop templates to psychological and physical effects and Government will allow for expansion support development and delivery of provision of services to manage issues, of mycareplan.org.au as part of the survivorship care plans. This will support a process for stratification to different ‘Embed and spread’ project in 2021. continuity of care for cancer survivors and models of care, and collecting data on primary care providers post-treatment. patient-reported outcomes, including Resources quality of life, and survival rates. There is an agreed need to enhance Quality framework for cancer This work is outlined in the Victorian the model of post-treatment care survivorship care in Victoria Cancer Plan 2020–24, and the ACSC for cancer survivors. To enable more Funded by the Victorian Government, will continue the work in 2021. people to learn about models of we undertook an environmental scan survivorship care, in 2020 we: and literature review to develop a Improving models of care • published ‘Models of survivorship Quality Cancer Survivorship Framework throughout Victoria care’ on our website as part of the broader project titled • developed ‘Recommendations The Victorian Government-funded ‘How do we define and measure for implementing and delivering project, ‘Embed and spread optimal optimal care for cancer survivors?’ shared survivorship care‘ in both cancer survivorship across Victoria’, These informed an online modified full and summary formats aims to increase commitment to and reactive Delphi study conducted over awareness of cancer survivorship care. • created a rapid learning two rounds. Participants were Australian In 2020, the ACSC commenced Project video (3 minutes) to explain and international, and included 1, which will involve virtual educational different models of care consumers, multidisciplinary healthcare roadshows to 15 Victorian cancer services, • developed three short videos (3 providers, researchers, policymakers, following a survey of sites’ current minutes) on nurse-led follow- and quality and accreditation staff. survivorship services. Project 2 (guided up care. The videos will be Statements describing quality criteria for by the results of Project 1) will expand available in early 2021. the Round 1 (R1) survey were presented mycareplan.org.au (currently available for in three domains: policy, process and survivors of early-stage breast, bowel and outcomes, participants were asked prostate cancers) to three further tumour to rate the importance of each of types. Stay tuned for more in 2021! 68 criteria on a five-point scale, and could make comments and suggest additions. Quantitative data were analysed according to pre-determined scoring thresholds and results used to develop the Round 2 (R2) survey. In R2, participants ranked their 10 most important items within each domain. Please consider the environment before printing me. Page 4
in touch News from the Australian Cancer Survivorship Centre January 2021 4. Conduct and support survivorship research The 3rd Victorian Cancer Victorian Cancer Survivorship ASCO Quality Care Symposium Survivorship conference Research Forum The ACSC was pleased to present on The 3rd Victorian Cancer Survivorship Hosted by the ACSC, the 4th Victorian ‘Defining and measuring quality cancer Conference was held in Melbourne Cancer Survivorship Research Forum was survivorship care: an environmental scan’; just before COVID-19 restrictions. open to anyone interested or involved the presentation can be accessed here. Co-hosted by the ACSC and the in cancer survivorship research. Held VCCC, we welcomed almost 200 via webinar in November, the forum COSA Annual Scientific Meeting local and international delegates. featured Prof Ray Chan who spoke about COSA’s 47th Annual Scientific Meeting building successful research partnerships focused on three themes: quality and The conference theme was ‘A 2020 through the Queensland Collaborative safety, implementation science and Vision – building on learnings, partnering for Cancer Survivorship. PhD candidate cardio-oncology. The meeting was for success’. Keynote speakers included Imogen Ramsey (University of South virtual for the first time and attracted Anton Enus, SBS nightly news anchor Australia) discussed her work developing a multidisciplinary group. ACSC’s and ambassador for Bowel Cancer a core patient-reported outcome set for Karolina Lisy presented on the project Australia, who shared meaningful survivorship. Dr Maria Ftanou spoke about ‘How do we define and measure insights into his lived experience as a the study ‘Feasibility and acceptability optimal care for cancer survivors?’ bowel cancer survivor. International of Fear-less: a stepped-care program to guests Professor Deborah Mayer (US) manage fear of cancer recurrence in Global Academic Programs (GAP) presented on ‘Defining and delivering people with metastatic melanoma’. conference quality survivorship care’ and ‘Promoting healthy behaviours in survivors’. The theme for the GAP 2020 conference Professor Adam Glaser (UK) presented Conference presentations was ‘New frontiers: leading inspired virtually on ‘Patient-reported outcomes We continued to contribute to research, cancer care’. Co-hosted by Peter Mac in survivors, also considering partners presenting at several conferences. the conference was fully virtual and and carers’ and ‘Progress beyond the UK connected members from across National Cancer Survivorship Initiative’. The 3rd Victorian Cancer Survivorship MD Anderson’s 52 sister institution Professor Afaf Girgis reported on Conference network. The conference explored how ‘Trajectories of functioning in survivors Convened in March 2020, presentations the integration of new technologies and partners/caregivers’ and ‘Routine included Prof Jefford on ‘Evaluation is changing cancer care, while also implementation of PROs in clinical care’. of the second phase of the Victorian highlighting the importance of keeping Winners of the conference Cancer Survivorship Program’, ‘SCORE: patients central in thinking and practice. awards included: a randomised controlled trial examining Prof Jefford and consumer advocate Meg shared care (oncology/general practice) Rynderman contributed to a webinar • Best student presentation on survivorship care and Helana Kelly for colorectal survivors’ and (with – Dr Victoria Garwood presented on the evaluation of the ACSC. Helana Kelly, Manager ACSC) ‘Review • Best oral presentation and evaluation of the Australian Cancer – Nathan Harrison Survivorship Centre’. There were further • Best poster presentation presentations from ACSC staff, including – Paula Howell Dr Karolina Lisy and Nicole Kinnane. Please consider the environment before printing me. Page 5
in touch News from the Australian Cancer Survivorship Centre January 2021 Student research 2020 publications The ACSC continued to work with and The ACSC continued to contribute to research publications. support students during 2020. Lena Ly, a biomedicine honours student, Publications Other survivorship papers we were completed work on the statewide pleased to contribute to include: The following 2020 publications quality framework for survivorship were ACSC-led or in partnership Eakin EG, Reeves MM, Goode AD, Winkler care in Victoria. Olivia Haeusler, an with others at Peter Mac: EAH, Vardy JL, Boyle F, Haas MR, Hiller applied science (professional) student, JE, Mishra GD, Jefford M, Koczwara commenced work on a pilot project Garwood V, Lisy K, Jefford M. Survivorship B, Saunders CM, Chapman K, Hing L, in colorectal cancer: a cohort study of Boltong AG, Lane K, Baldwin P, Millar L, relating to volunteers and cancer the patterns and documented content McKiernan S, Demark-Wahnefried W, survivors at the Parkville precinct, which of follow-up visits. J Clin Med 2020 Aug Courneya KS, Job J, Reid N, Robson E, will be completed by the ACSC in 2021. 24;9(9):E2725. doi: 10.3390/jcm9092725. Moretto N, Gordon L, Hayes SC. Translating research into practice: outcomes from the Jefford M, Koczwara B, Emery J, University Cancer Case Thornton-Benko E, Vardy J. The Healthy Living after Cancer Partnership Project. BMC Cancer 2020;20(1):963. Competition important role of general practice doi: 10.1186/s12885-020-07454-4. in the care of cancer survivors. Aust The ACSC and the VCCC collaborated with J Gen Pract 2020;49(5):288–92. Howell D, Mayer DK, Fielding R, Eicher the Australian Cancer and Health Sciences M, Verdonck-de Leeuw IM, Johansen C, Lisy K, Kent J, Dumbrell J, Kelly H, Piper Competition to support the University Soto-Perez-de-Celis E, Foster C, Chan R, A, Jefford M. Sharing cancer survivorship Cancer Case Competition which, in 2020, Alfano CM, Hudson SV, Jefford M, Lam care between oncology and primary care encouraged undergraduate students to WWT, Loerzel V, Pravettoni G, Rammant E, providers: a qualitative study of health care Schapira L, Stein KD, Kocswara B; Global consider solutions to cancer survivorship professionals’ experiences. J Clin Med 2020 Partners for Self-Management in Cancer. issues. The competition received 72 Sep 16;9(9):E2991. doi: 10.3390/jcm9092991. Management of cancer and health after registered teams (total 260 students), Lisy K, Kent J, Piper A, Jefford M. the clinic visit: a call to action for self- where 66 teams put forward submissions Facilitators and barriers to shared primary management in cancer care. J Natl Cancer (compared to 44 received in 2019). The and specialist cancer care: a systematic Inst 2020 Jun 11. Online ahead of print. winning group, ‘Climbing out of cancer’, review. Support Care Cancer 2020 Aug Mollica MA, Mayer DK, Oeffinger KC, Kim are undertaking a summer internship 17. doi: 10.1007/s00520-020-05624-5. Y, Buckenmaier SS, Sivaram S, Muha C, with the VCCC and the ACSC and will Lisy K, Lai-Kwon J, Ward A, Sandhu Taib NA, Andritsch E, Asuzu CC, Bochis present to the Cancer Survivorship S, Kasparian NA, Winstanley J, Boyle OV, Diaz S, Trill MD, Garcia PJ, Grassi L, Advisory Committee in early 2021. The F, Gyorki D, Lacey K, Bishop J, Jefford Uchitomi Y, Shaikh AJ, Jefford M, Lee runner-up group, ‘Transfer of trust, M. Patient-reported outcomes in HJ, Johansen C, Luyirika E, Maher EJ, melanoma survivors at 1, 3 and 5 years Mallillin MMB, Maniragaba T, Mehnert- survivorship care program’, presented Theuerkauf A, Pramesh CS, Siesling S, post-diagnosis: a population-based to the committee in November 2020. cross-sectional study. Qual Life Res Spira O, Sussman J, Tang L, Hai NV, 2020 Mar 5. Online ahead of print. Yalcin S, Jacobsen PB. Follow-up care for breast and colorectal cancer across Lynch FA, Katona L, Jefford M, Smith AB, the globe: survey findings from 27 Sham J, Dhillon HM, Ellen S, Phipps-Nelson countries. JCO Global Oncol 6:1394–1411. J, Lai-Kwon J, Milne D, Russell L, Dax V, Diggens J, Kent H, Button-Sloan A, Elliott Book chapter J, Shackleton M, Burridge H, Ftanou M. Feasibility and acceptability of fear-less: Lisy K, Hulbert-Williams N, Ussher JM, a stepped-care program to manage fear Alpert A, Kamen C & Jefford M. Lesbian, of cancer recurrence in people with gay, bisexual, and transgender issues. metastatic melanoma. J Clin Med 2020 Sep In: M Watson & D Kissane (eds), Sexual 14;9(9):E2969. doi: 10.3390/jcm9092969. health, fertility, and relationships in cancer care, Oxford University Press, 2020:1–10. Skandarajah AR, Lisy K, Ward A, Bishop J, Lacey K, Mann B, Jefford M. Patient- For more information on survivorship reported outcomes in survivors of research, including current and breast cancer one, three and five years completed projects, opportunities post-diagnosis: a cancer-registry based feasibility study. Qual Life Res 2020 Sep for students and publications, 30. doi: 10.1007/s11136-020-02652-w. visit the Survivorship and Living Well after Cancer page. Please consider the environment before printing me. Page 6
in touch News from the Australian Cancer Survivorship Centre January 2021 5. Provide leadership around cancer survivorship Victorian Survivorship In July, the NGO Survivorship Advocacy contributions to service delivery, Alliance Working Party prepared a international literature, policy and Community of Practice letter to the Federal Minister for Health, program development. He is also the The Victorian Survivorship Community strongly supporting the retention of Chair of COSA’s Cancer Survivorship of Practice brings together health telehealth item numbers through Group and the Chair of the Survivorship professionals with an interest in cancer and beyond the COVID-19 period. A Special Interest Group with the survivorship and the implementation positive response was received from International Psycho-Oncology Society. of new models of care, providing an the Hon Greg Hunt MP acknowledging Dr Karolina Lisy is an executive member opportunity to discuss key aspects of the position of the Alliance. of COSA’s Cancer Survivorship Group. cancer survivorship. With the July event The Community Support Organisations’ cancelled due to COVID-19 restrictions, Cancer Survivorship Care Consensus Partnering with cancer the October webinar agenda was survivors Statement was updated in December full and attracted 80 attendees. 2020 with the inclusion of 12 additional The ACSC website includes a number Presenters included Ms Karen Botting signatories, bringing the total number of survivorship stories from consumers (Department of Health and Human to 31. The ACSC looks forward to coordinated by ACSC consumer Services), Prof Janette Vardy (Sydney continuing these partnerships in 2021. If advocate, Meg Rynderman. Meg Cancer Survivorship Centre) and Prof your community support organisation wrote her own survivor story 10 years Bogda Koczwara (Flinders Health would like to know more about NGO ago and in 2020 published ‘10 years and Medical Research Institute). forums and the Alliance, please on – my story retold’. Videos of Meg The Online Collaborative Workspace, email contactacsc@petermac.org. and her husband, John, talking about which is open to interested health their experience of cancer survivorship professionals, in 2020 consisted in brief videos, are available here. of 458 members. This online COMMUNITY SUPPORT space is a forum to share ideas, ORGANISATIONS’ Meg also told Malcolm Chandler’s story ‘We didn’t have events, project updates and more Cancer slip slop slap back then’. relating to cancer survivorship. Survivorship Care For further information or to join Consensus We encourage you to read these the Community of Practice or the Statement survivorship stories and more Online Collaborative Workspace, DECEMBER 2020 by visiting the ACSC website. email contactacsc@petermac.org. PURPOSE Non-government Committee membership To articulate the vital role of community support organisations in the provision of survivorship care to Australians of all ages who have been diagnosed with organisation collaboration The ACSC continues to provide cancer. AUDIENCE leadership in cancer survivorship • primary care providers Non-government organisations (NGOs) • • • hospital-based providers on state, national and international community support organisation providers and patient organisations funders have an important role in supporting • • • policy makers (State and Federal Government) committees. Examples of some researchers cancer survivors and those affected by cancer cancer survivors. The ACSC remains (but notINTENDED all) of USE the advisory committed to working with NGOs to committee work we do are below: To communicate the role of community support organisations in providing survivorship care in order to: promote better understanding amongst audience groups, to consider how community providers can be best incorporated as part of the achieve optimal care and outcomes continuum of care, to improve integrated referral pathways, to support advocacy and collaboration within the sector (including collaborative funding opportunities) and to improve understanding across the health sector more broadly. for cancer survivors. The ‘Cancer Prof Michael Jefford is Chair-Elect survivorship in the NGO sector’ forum 2020–21 (to be Chair 2021–22) of the was held in March, with 16 NGOs American Society of Clinical Oncology in attendance. The forum included (ASCO) Cancer Survivorship Committee. presentations on the top six advocacy This appointment – the first person issues pertaining to cancer survivorship from outside the United States to chair for NGOs, created opportunities for the committee – recognises Professor collaboration and facilitated discussion Jefford’s international standing in of the published consensus statement. cancer survivorship and his significant Please consider the environment before printing me. Page 7
in touch News from the Australian Cancer Survivorship Centre January 2021 6. D eliver a robust, collaborative and sustainable program Planning ahead In 2021 and beyond, our plans include: • launching the ACSC Strategic Plan 2020–25 • delivering the project ‘Embed and spread optimal cancer survivorship across Victoria’ • continuing to develop and publish survivorship resources for consumers and health professionals on the ACSC website • continuing to work with the Parkville electronic medical record team to incorporate survivorship resources • presenting at the Flinders– COSA meeting Cancer Survivorship Conference Life after Cancer - Redefined, The team in 2020 Reimagined and Rebuilt, We thank everyone who has worked with us this year! 18–19 March 2021, Adelaide • working with Peter Mac Our website Social media and Parkville colleagues to improve the models of During 2020, the ACSC website was In February 2020, the ACSC launched post-treatment care accessed 26,047 times with 20,390 unique our social media presence: page views! People visiting our website • presenting and Twitter (@ACSC_PeterMac): spent an average of 1.28 minutes on publishing our work The ACSC had more than the homepage. The most frequently 200,000 Twitter impressions • planning for the 4th Victorian viewed pages were the ACSC homepage (number of times users saw ACSC’s Cancer Survivorship Conference and the ‘Survivors and carers’ page. tweets). Since the inception of our to be held in 2022 The ACSC is proud to provide Twitter handle in March, we have more • delivering a volunteer-led resources for survivors, carers than 380 followers and 240 tweets. survivorship pilot project and health professionals. There with Parkville Head and LinkedIn (Australian Cancer were over 4000 downloaded PDF Neck Cancer Services and Survivorship Centre): resources throughout 2020! Cancer Council Victoria. Follow the ACSC on In 2020 we developed four newsletters social media for event updates, and a Year in Review summary new resources and research! to add to our publications. Australian Cancer Survivorship Centre Locked Bag 1, A’Beckett Street Melbourne VIC 8006 Email: contactacsc@petermac.org petermac.org/cancersurvivorship Please consider the environment before printing me. Page 8
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