Prof David Ball and A/Prof Gavin Wright
The Lung 2019 Summit
The second lung cancer summit was held on February 22 at the RACV Club. It was extremely successful, with the highest attendance of any summit thus far. In addition to the various clinical specialties involved in the care of lung cancer patients, there was good representation from general practice, allied health practitioners, statisticians and importantly, consumers. Attendees rated the day an average of 9/10.
The scene was set by Gavin Wright, who presented local data derived from the DHHS linked datasets, the Victorian Cancer Registry, the Centre for Victorian Data Linkage and the Victorian Lung Cancer Registry. These constitute surprisingly rich sources of statewide population-based information such as:
- Five-year lung cancer relative survival is increasing (8% for 1986–1990, 18% for 2011–2015).
- The proportion of patients presenting with metastatic disease is around 50%.
- Survival of patients living in regional Integrated Cancer Services (ICS) is inferior to patients living in metropolitan ICS.
- There is significant variation across ICS in documentation of patients presented at a multidisciplinary team meeting (MDM).
- There are some significant differences in survival between ICS of residence, especially for non-metastatic lung cancer.
- There are some significant differences between ICS in radiotherapy and chemotherapy utilisation rates.
As well as these geographic variations in care and outcomes, it is also of concern that about one in four lung cancer patients never receives any anti-cancer treatment. A depressing statistic that has not changed in the last 30 years, the reason for it remains unexplained and should be investigated. Anecdotally, it is unusual for an MDM to recommend no treatment for a newly diagnosed lung cancer patient.
This raises the question of whether there are problems of referral and entry into the healthcare system for some patients who are never presented to a specialty MDM group. It is also possible that system issues result in delayed diagnosis and work up, meaning patients become too ill from disease progression to receive active treatment. It will be necessary to establish if and how often an MDM recommendation for active treatment is rejected by a patient or their treating clinician.
ICS identified as outliers in processes or outcomes at the Lung Cancer 2019 Summit need to work within their regions and take corrective actions if local investigations demonstrate unwarranted variations.
Please see the Lung 2019 Summit webpage for more information.
Dr Rebecca Bergin
Clinical leadership in cancer policymaking
In June 2015, I had a PhD progress meeting with my supervisors and committee members. We were discussing one of the major aims of my thesis: to inform policy change to reduce rural–urban disparities in cancer outcomes in Victoria.
We decided that, in order to inform new policies, we needed to identify the important levers and challenges to policymaking in cancer care. I was interested in the role of evidence in cancer policymaking, particularly for large-scale health service change in high-income countries with similar health systems to Australia.
To investigate how cancer policies are developed and implemented I interviewed key informants from five countries: Australia, New Zealand, Canada, Scotland and Denmark. Interviews focused on a program or policy the informant had been involved with, and common levers and challenges across countries were collated.
We found that although research evidence was important, it was insufficient for cancer policy change. Other factors were also important, including:
- stakeholder collaboration
- program adaptability
- clinician and consumer involvement
- the context in which change was occurring.
Clinical engagement, consumer input and context could be highly influential for cancer policymaking in particular.
Some sub-themes were found to be both levers and challenges—namely individual and program leadership, governance and stakeholder collaboration. Interviews indicated clinical leaders were essential for driving improvements in clinical care (Scotland) and that clear, well-described leadership from the absolute top was an effective lever (Denmark). Clinical leaders who were not guided and supported towards seeing themselves as having key roles to play (Scotland) and who weren’t put at the front of the change process as policy leaders (Australia) were unable to effect change.
Contextual factors moderated how and why programs progressed. Five main sub-themes were identified:
- evolution of policies over time
- financial and resource context
- the healthcare system
- political and policy priorities
- access to influence.
Cancer policies were sometimes developed and implemented in the context of other general health and non-health policies. Policy priorities such as cancer plans could facilitate change. There was a perception amongst interviewees that consumer engagement and involvement was likely to be an important factor in promoting policy change in the future.
In larger population countries such as Australia, where access to relationship building with political decision makers and other stakeholders may be more difficult than in smaller population countries such as New Zealand and Denmark, it was recognised that organisations with a large membership base could be powerful lobby groups.
This work suggests that, when forming and implementing new health service policies in cancer care, research evidence should be considered alongside factors such as policy context, leadership, advocacy and clinical engagement. We propose that further understanding and harnessing of these factors could also be useful in future efforts to influence policy change in cancer care, such as policymaking to address rural–urban disparities.
If you would like read the paper you can get a free copy until 13 July 2019 by clicking this link: https://authors.elsevier.com/a/1Z6V7cP6mzqzG
Bergin R.J., Emery J., Bollard R., & White V. (2019). Research evidence supports cancer policymaking but is insufficient for change: Findings of key informant interviews from five countries. Health Policy, 123(6), 572-581. doi: https://doi.org/10.1016/j.healthpol.2019.04.003
Dr Bergin is a Research Fellow at Cancer Council Victoria and Honorary Research Fellow in the Department of General Practice and Centre for Cancer Research at the University of Melbourne. Her research interests include inequities in cancer care, particularly rural-urban inequities; access and timeliness of cancer care; optimal care pathways; and understanding cancer policymaking. Dr Bergin is currently working on an NHMRC partnership grant led by A/Prof Roger Milne with Cancer Council Victoria and the Victorian Government’s Department of Health and Human Services. She is also a member of the International Cancer Benchmarking Partnership Module 4 working group.
Publication date 18 December 2018
2 minute read
A/Prof Paul Cashin
There are very few times in medicine, despite the dedication we all have to treating our patients, when we are presented with the opportunity to genuinely make a difference. The development of optimal care pathways (OCPs) has proved to be one of these.
The considerable geographical distances between patients and their major tertiary care centres are coupled to an increased patient expectation of personalised care, meaning Australia has a unique health care service to deliver. Many of us practicing in the ‘cancer world’ have for years noticed the disparity in care we are able to provide for our regional patients. We also have a problem organising effective delivery of care in our larger cities. But was this perception of inadequacy real, or were we just remembering the outliers in timeliness of care?
Our impressions were right. Pilot studies looking at cancer care delivery were commissioned in prostate and lung cancer, and subsequently in oesophageal and gastric cancer. These studies clearly showed that we weren’t in all cases delivering high quality, timely care to patients. We were letting our population down. I never want to see a patient again who has waited months to receive treatment for their cancer! My record was a three months’ wait to care!
Individual tumour summits were developed to tap into all the resources available to help solve these issues. Working parties and design groups were developed around multidisciplinary teams, involving all stakeholders in cancer care provision for individual tumour streams, to develop agreed OCPs. Once this exciting design phase was completed, projects to effect and measure change were commenced. More cancer groups were included and momentum accelerated. Changes were realistic, and most importantly involved our regional colleagues with their unique perspective.
This program is, somewhat surprisingly to a political cynic, fully supported by government in terms of funding and resources. It does, however, require huge commitment from individual hospitals and their teams of medical, nursing, allied health and administration staff to enact these programs. It requires commitment from our care deliverers.
For teams who are moving from the design and implementation stage to the outcome measurement phase, it is exciting to see what the effects of these changes will be. For tumour streams who are working toward this, there is a body of experience now available to assist their plans.
What an exciting time it is to be involved in real change! From identifying and measuring the problem, convening a tumour summit to discuss the problem and then effecting change, this is how it is meant to work! It has.
To the teams developing these OCP programs, my hat goes off to you. You are genuinely making a difference. Tumour summits continue to be the key in helping monitor change and develop new programs. These are incredibly important!
Our patients thank you!
Room 64 podcast, episode two (abridged):
Demystifying palliative care
'The message we want to get out is palliative care is everybody’s business.
When people were dying a hundred years ago it was their family, friends and community who looked after them. There may have been a doctor or a death doula in the mix.
We’ve medicalised dying—it’s become a business. It costs a lot to have a funeral if you follow the conventional pathway. We’ve made it into an area for experts. And the problem now in the public system is we’ve got to pay those experts, we’ve got to pay for those beds, we’ve got to have space for these people—who now believe dying is something you do in hospital—to be. And we don’t have the space for that.
As we move forward we’re going to have to move back to that time when we looked after our dying at home or, at least, part of their care at home. Their end-of-life care may be in a facility but a lot of it will be done at home.
We have two hundred patients in the community, just in the Barwon catchment. We’ve got nurses, doctors, allied health and supportive care out in homes. Not just doing the work but empowering people to do the work.
Ultimately, we want to go in and provide education, support and planning so that families can care for the people that they love. This might be, for example, getting an occupational therapist to teach someone how to move a person in the bed and be able to care for them and wash them. It might be about linking people in with their support networks. It’s ok to ask people to help—your neighbour, your community. I think there is still a cohort of people who think you can only get good care if you are in the four walls of a hospital. But we are getting there. If we look at care of the dying it is wholistic care. There is actually more value in the things we can teach people to do [for themselves].
I remember on one occasion we began to wash the body of a father, who had died at home, when my colleague and I realised someone must have already been doing this for him while he was alive. I looked around the room and saw the son sitting at the table, watching us. I said, "Have you been doing this for him?" and he said, "Yes". So we stopped and moved away and let him do what he’d been doing all along for one last time.
I had a great relationship with my godmother, who unfortunately developed lung cancer. I spent time with her while she was in the palliative care unit. I was really fearful. I saw big syringes in a box, which I thought were morphine. I worried I didn’t know what to say to her and if [the medication] was making her die sooner. Her breathing would change and we would get worried.
Her nursing friend came and took me aside and said she may die that night. She told me it would be ok and that it would be peaceful. She then spoke to my godmother, who was not conscious. She hugged her and told her it was going to be ok. I thought that was amazing, [that she knew] how to hold and speak to her unconscious friend.
Talking about death is not dinner conversation. My goal is that we can talk about death and dying. It’s something everyone is going to experience at some point. Dying is not ever going to be one hundred percent ok because of the people who will miss you, and you worry about those people who love you and the people you are leaving behind. Palliative care is about easing physical and emotional symptoms—and existential distress—to help people live well while they are living and to ease them into death.'
Melanie Davies is a clinical nurse consultant at Barwon Health Palliative Care
For the full interview, listen to Room 64: A Palliative Care Podcast, on the Barwon Health website or on podcast services including iTunes and Spotify.
Dr Maria Ftanou
Managing fear of cancer recurrence
Fear of cancer recurrence (FCR) has been defined as the fear that cancer could return or progress in the same place or in another part of the body. It affects up to 70% of all cancer survivors. It involves intrusive thoughts, worries, hypervigilance to physical symptoms and either avoidance of, or excessive levels of symptom checking. At clinical levels, FCR has debilitating effects on survivors’ day-to-day functioning, work, mood and quality of life.
Emerging research suggests that people receiving immunotherapies and targeted therapies may be at increased risk of experiencing FCR, with rates as high as 86% for melanoma survivors. Several psychological interventions have been developed and trialled to better address FCR in both early and advanced diseases, with results indicating improvements in quality of life and decreased depression, anxiety and overall stress levels. Despite these advances, our understanding of FCR and how to treat it in survivors receiving immunotherapies and targeted therapies is still in its infancy.
Peter MacCallum Cancer Centre, in collaboration with the Alfred, the Psychosocial Oncology Research Co-Operative Group, the Australian Cancer Survivorship Centre, survivors, and the Centre for Oncology Education and Research Translation (CONCERT), has developed a stepped-care program aimed at addressing FCR in survivors with stage IV melanoma who have been treated with immunotherapies or targeted therapies. The stepped-care program, titled 'Fear-Less', is supported by the Victorian Government. Fear-Less allows different intensity of interventions to be targeted to survivors with different levels of need. It involves two steps:
Step 1: Screening
The Fear-Less program uses two scales to determine severity levels of FCR:
- The Fear of Cancer Recurrence Inventory Short Form (FCR-SF), a 9-item self-report questionnaire that assesses the presence, frequency, and duration of thoughts associated with fear of cancer returning or progressing; and
- the Fear of Progression Questionnaire Short Form (FoP-Q-SF), a 12-item self-report questionnaire that assesses the level of fear of progression.
Step 2: Stratification of care based on need
Survivors are stratified into treatment based on severity levels of FCR.
Self-management intervention: Survivors identified with moderate levels of FCR are provided with a purpose designed Fear-Less self-management booklet and education on how to use the booklet. The booklet was co-designed with survivors and includes psychoeducation about FCR, strategies to manage worry and uncertainty, information about self-examination and symptom monitoring, resources to help manage other difficult emotions (e.g. anxiety and depression) and links to reputable websites for updated information about immunotherapies and advanced melanoma. Survivors are also provided with brief telephone support to help reinforce skills.
Individual intervention: Survivors identified as having clinical levels of FCR are offered five individually tailored sessions based on the Conquer Fear protocol. These sessions include metacognitive therapy, attention training, detached mindfulness and value-based goals setting. Each session is approximately 60 minutes duration and is facilitated by a clinical psychologist.
Over a 16-week period the Fear-Less program has screened 61 outpatients with stage IV melanoma treated with novel therapies for FCR. Preliminary results indicate that 64% (39/61) of survivors screened experienced moderate or severe levels of FCR, highlighting a need for intervention in this population. Ninety-two percent (36/39) of survivors accepted interventions (25 accepted self-management and 11 accepted individual psychological interventions). The small number of survivors (3) who declined did so because they did not believe their FCR was problematic or interfering with their life. Almost 70% of survivors had never been asked about FCR during their treatment.
Participants are still in the process of completing interventions and all interventions will be complete by August 2019. Of the 14 survivors who have already completed the self-management intervention, 86% reported that they would recommend Fear-Less to others and none of these survivors have required support for FCR following the program.
These early results of Fear-Less are promising. The stepped-care approach is a potentially sustainable and effective model of care that could lead to systematic identification of survivors with FCR and provide access to interventions tailored in intensity according to individual need.
Dr Maria Ftanou is the head of the Clinical Psychology Department at the Peter MacCallum Cancer Centre in Melbourne and a research fellow at the School of Population and Global Health at The University of Melbourne. Maria has over 17 years of clinical experience in mental health and psychosocial oncology. She and her team provide evidence-based psychological interventions to people with cancer and their families across the cancer trajectory. Maria’s research has primarily focused on improving mental health and wellbeing at a population level.
Publication date 18 December 2018
2 minute read
Pancreatic cancer: Patient perspective
Karen was diagnosed with pancreatic cancer in 2014. She was treated with neo-adjuvant therapy and surgery.
We were privileged to hear her story. Here she shares her experience and advice.
Prior to diagnosis I was very, very busy working full time for medication review consultants in Warrnambool and a busy grandmother. Life was just wonderful and busy. It was really quite sudden. When I saw my surgeon four days later he explained I had a tumour on the head of the pancreas and what had to be done – basically we had one crack at it or I died. I'm a realist and I have my faith so it was just, okay, if this is my turn, it’s my turn. I honestly didn’t freak out at all. I just watched the family. It was horrible watching the fear in their faces and, you know, their tears. But I didn't have fear myself.
The treatment was something very new, they hadn’t done it before. Normally it was the operation first to remove the tumour, then go into chemo and radiation. My treating team decided to do chemo first, then radiation. If I passed those two I made it into the operation.
Hospital was a very different scenario. That was where it was hardcore and I nearly died three times while I was in. This was after the operation. The first eight days I sat up like Jackie, welcoming everybody and day eight I crashed.
I'm just so grateful I had so much love and care around me. Working in that field there are very, very special people. I think if you haven't got the qualities of empathy and sympathy and the care factor, don't go into that field because they’re the things that got me through. All the doctors I was under were happy people, and loving and caring. To be made to feel that you are special, that they are genuinely working for you and you're not just a number, meant everything. They’re really important things.
People say, “You don't know me, I’ve got pancreatic cancer. Can I come and talk to you?” I say, “Come in, we will put the kettle on.” My advice to people who knock on my door now? The first thing is go with your gut. It's that faith thing, it’s that feeling. If you’re not happy with your surgeon, your first port of call, go to number two, go to number three. Don't stay with number one if she's not the right one or he's not the right one. That is the first thing I would say to anybody who’s diagnosed with pancreatic cancer because it is a long journey, a very serious journey, and if it is your last journey you want it to be a happy one. A loving one.
Publication date Fri 31 Aug 2018
2 minute read
Mr Brian Hodgkins & Dr Geoff Chong, co-chairs Colorectal Cancer 2018 Summit working party
Colorectal 2018 Summit: Where to from here?
On the 16th of March 2018, the second Colorectal Cancer Summit was held at the RACV Club in Melbourne. There was encouraging attendance from across the state including all Integrated Cancer Services. There was also a good spread of disciplines of health practitioners. The goals of the second Summit were:
- To revisit the conclusions of the first Summit and assess progress.
- To acquaint the participants with new information which has become available due to advancements in data collection and cross-linking of datasets. These data provided demographic, survival and treatment results across the state, enabling comparisons to be made.
- Informed by these data, the participants were asked to form views on the importance of variations and the possibilities for eliminating these variations.
- Next, there was a panel discussion of examples of improvements made to Colorectal cancer care in various Integrated Cancer Services. The emphasis here was on local action to improve services.
- Lastly, participants were grouped according to their local Integrated Cancer Service and were asked to address any variations or issues that were deemed to be relevant to their Service.
The Summit conclusion listed two variations in care which were deemed high impact/low effort to remediate:
- Increasing the proportion of CRC patients presented at MDM
- Increasing the utilization of chemotherapy for stage III colon cancer patients
Four variations were deemed high impact/high effort:
- Increasing the percentage of pre-treatment MDM discussion for rectal cancer patients
- Addressing the variation in utilization of neo-adjuvant radiotherapy in rectal cancer patients
- Improving the lymph node harvest in colon cancer resections
- Improving the timeliness of adjuvant chemotherapy for stage III colon cancer patients
One topic which arose from the panel discussion was the fact that MDM presentation not infrequently resulted in significant changes to radiological and pathological reporting. This was particularly so in rectal cancer patients and more often related to radiology than pathology. There was some discussion regarding standardisation of reporting and specialisation of radiologists and pathologists involved in Colorectal cancer treatment.
A healthy multidisciplinary team provides the ultimate scrutiny of patient’s treatment plans. We believe that many of the variations we have observed would not be evident if all patients had the benefit of their cases being discussed at MDM. For rectal cancer patients this discussion needs to take place pre-treatment. Achieving this goal requires significant time and effort for the MDM participants. Summit attendees noted the extra burden that is carried by the team members.
The success of the Summit will hopefully be measured by improvements in colorectal cancer care and elimination or explanation of variations we noted above. What can be said of the Summit at this point, is that it was an opportunity to identify variations in care and outcomes. It is now time to focus on local actions with the support of our Integrated Cancer Services. In order to continue the momentum created by the Summit we plan to form a committee comprised of members from each Integrated Cancer Service to focus on local actions.
To learn more about the Colorectal Cancer 2018 Summit click here.
Prof Meinir Krishnasamy
The WeCan patient website
In 2017, the Victorian Department of Health and Human Services funded the Cancer Nursing Research Group at the University of Melbourne. With this funding, the group undertook a two-year study to strengthen Victoria’s capability to embed supportive care as an integral component of quality cancer care. The project had two key aims:
- To identify opportunities to refresh existing and develop new supportive care resources and training materials
- To support and build workforce capability to strengthen and embed supportive care in cancer for all Victorians affected by cancer
The project drew on the experiences and expertise of over 370 stakeholders to deliver against the study aims through a series of town hall meetings, the establishment of a supportive care in cancer community of practice and a discrete co-design study. Stakeholders included patients, carers and multidisciplinary clinicians across acute, community, regional and metropolitan services. Stakeholders also included representatives of support groups, non-government organisations, and policy and academic staff.
On 6 May 2019, the new and refreshed supportive care resources were launched to increase clinician and consumer awareness of the importance of supportive care, drive activity through consumer advocacy and contemporary clinician education and training, and maximise the impact of supportive care for all Victorians affected by cancer as a consequence of enhanced awareness and activity.
The WeCan.org.au website was developed in response to participants’ feedback that identified a need for a comprehensive resource to allow easy access to evidence-based supportive care information, resources and services. The site includes information about cancer diagnoses, optimal care pathways, community services, exercise and much more. Importantly, the site enables patients to complete the Distress Thermometer and Problem List1, download the completed documents and take these documents with them. These documents can then be used to guide either a discussion with their GP, a member of the patient's treating team or a support person in a cancer support organisation. A WeCan postcard has been developed for dissemination across health services and sectors so that patients or family members can be easily directed to the WeCan.org.au website by Anyone, at Anytime and Anywhere.
Since the launch in early May 2019, over 1000 individuals have accessed the WeCan.org.au website and almost 7000 postcards have been distributed. To obtain copies of the postcard for your service, contact your local Integrated Cancer Service or the email below.
A new, online supportive care education module has been developed, based on feedback from study participants. The module targets the needs of any health professional working with a person affected by cancer, maximising opportunity to build breadth of workforce capability. The module went live on 12 June 2019, and is free to access at <https://education.eviq.org.au/supportivecare>.
To learn more about the WeCan framework please contact <Enquiries-CNRG@unimelb.edu.au>.
1https://www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf (retrieved, June 2019)
A/Prof Brian Le
Evidence for early palliative care mounts
The existing care structures that make up ‘modern’ palliative care have their roots dating back to the 1950s, originating in the UK and North America. This development arose from recognition that despite advances in medical care, we perhaps had lost the ability for our health services and communities to provide optimal care for dying patients and their carers.
It took further decades to better describe how these services could be involved with care and improve quality of life, beyond solely end-of-life care. A landmark 2010 study conducted at a Harvard University associated hospital in Boston, USA, demonstrated that for a group of patients with incurable lung cancer, early involvement with palliative care services not only improved quality of life measures but also improved survival, presumably by concurrently addressing oncological treatment aims and palliative care needs. Subsequently, a range of studies have mirrored these findings across North America, Europe and Australasia in a variety of settings, and in cancer and non-cancer conditions. In 2012, the American Society of Clinical Oncology (ASCO) released their first 'provisional clinical opinion'. It recommended to its members and oncology services globally that patients with metastatic cancer should be considered for referral to palliative care services early in their disease course and palliative care be provided concurrently with anti-cancer treatments. In 2017, ASCO strengthened this recommendation, on the basis of further evidence, to early palliative care involvement should become part of the standard of care for all advanced-cancer patients.
So, what should this look like in 2018 in Victoria, and more specifically in pancreatic cancer? Local data confirms worldwide data that referral to palliative care can and does improve symptoms experienced by patients and improves quality of life. Further data shows that palliative care involvement can assist patients to receive care outside of hospitals, reduce ‘aggressive care’ at end-of-life (ie. ICU admissions and chemotherapy delivery within a short period before death), and in particular can increase rates of death in a patient’s venue of choice. But involvement with palliative care does not appear to be provided uniformly to all across the state, with anecdotal suggestion of considerable variation in care in Victoria. Data suggests higher death rates within acute hospital settings for those with pancreatic cancer when compared to other cancer types.
With the focus of optimal care pathways being on standardisation of care across all settings, it is timely and appropriate that one key area for further work has been identified as the standardised early involvement of palliative care as part of routine care for patients with pancreatic cancer. It is now time for each of us to consider how we progress towards this goal of standardised early integration, and make this work to the benefit of our patients and their carers.
To learn more about the Pancreatic Cancer Summit, click here.
Alan Peck, Melbourne
The biggest surprise
Hi, my name is Al Peck. I am 60 years old and I was diagnosed with head and neck cancer in September 2017. As mature adults, our lives usually consist of planning and discussing activities before actually doing them. This allows us to mentally prepare for anything from a new job to a holiday. We can ease ourselves into it.
I think it's fair to say that getting cancer is one of the biggest surprises you can have. When I went home and told my wife and kids, the first thing we said is that we need to determine a strategy and attitude about this situation.
I am no comedian, but I have owned a number of comedy venues and have spent a lot of years laughing about everything that life presents. Our family decided that, no matter what happens, we will joke and make light of the situation because I had very little control of the outcome anyway.
I had arranged a big 60th birthday bash prior to my news. When we all got together everyone was very worried about me. I had, by that time, spent a lot of time at The Peter MacCallum Cancer Centre with the magnificent staff who treated me with so much care, humour and compassion. So I set the tone of the party by saying, in my party speech, "If I knew how wonderful everyone was at Peter Mac, I would have got cancer 20 years ago!"
I had the choice of trying two operations, the second being robotic surgery, or go straight to chemo and radiation. I have never been a smoker or drug taker and I don't even drink spirits, so I thought I would try the drug-free operation. They told me there was no guarantee of success and I said OK. I can't deny the operations were pretty tough, but when you have fantastic support around you, like at Peter Mac, that makes a huge difference.
Once the operations settled down and they had a look, my 35mm lump had almost gone, but, as Maxwell Smart would say, "missed it by that much." There was 1.6mm left after the operation, because they couldn't go any nearer to my vocal folds I believe - bugger. When the doctor came in to tell me, I really felt for him. I told him they advised me well and I would have always chosen that path first even though there was no guarantee.
I went through almost seven weeks of chemo once a week and radiation every week-day which was “interesting” to say the least. I didn't lose my hair or get sick with chemo. I feel good now, albeit still pretty tired, and my primary cancer has gone. If you are going to get cancer, this is the right time in the history of the world to do it. So, as strange as it sounds, I feel very lucky. I also feel honoured to have dealt with all the amazing people at Peter Mac. They have changed my life by seeing the way they handle adversity for others.
Publication date Wed 4 Jul 2018
2 minute read
Dr Charles Pilgrim, co-chair Pancreatic Cancer Summit working party
Pancreatic 2017 Summit outcomes: Where to from here?
The Victorian Pancreas Cancer Summit was held in Melbourne, November 2017 as part of the Integrated Cancer Services Tumour Summits programme. In preparation for the event the working party had analysed state-level data on management of all patients diagnosed and treated for pancreas cancer in Victoria between 2011-2015. Linkage between the Victorian Cancer Registry, the Victorian Admitted Episodes Dataset, the Victorian Radiotherapy Minimum Data Set and the Victorian Death Index provided data on treatment and outcome for all Victorians aged 18 years and older with a primary diagnosis of pancreatic cancer. Statistical analyses were performed to calculate incidence, survival and to demonstrate treatment pathways for metastatic and non-metastatic patient groups.
There were 3,962 Victorians diagnosed with all forms of pancreatic malignancy between 2011-2015 of whom 82% had pancreatic ductal adenocarcinoma (PDAC), and 67% of these patients had metastatic disease at diagnosis. The age standardised incidence rates for all pancreatic malignancies increased from 6.8 cases to 7.4 cases per 100,000 between 2011 and 2015. One-year relative survival for PDAC diagnosed between 2011 and 2015 was 31% overall, 61% for non-metastatic and 16% for metastatic patients. Median survival for patients with metastatic PDAC increased from 2.7 months (95%CI=67-91 days) in 2011 to 3.9 months (95%CI=103-137) in 2015, and from 13.3 months (95%CI=362-460) to 15.9 months (95%CI=425-556) for non-metastatic cases.
More than two thirds of non-metastatic PDAC patients never proceeded to surgical resection, with only 31% undergoing pancreatectomy. There is no state-level data on whether these patients had resectable, borderline-resectable or locally advanced (non-metastatic) disease. Clearly patients with locally advanced/unresectable disease should not proceed to surgery, whereas the only hope for cure of those with resectable disease is complete resection (followed by systemic therapy). Borderline-resectable disease should be treated with neoadjuvant systemic therapy followed by surgery. During this time period, only 1.5% of non-metastatic patients were treated with neoadjuvant chemotherapy or chemo-radiation who proceeded to resection. Future classification of non-metastatic patients as one of these 3 categories is critical to understand how patients are treated, and to enable variations and deficiencies in care to be identified. Discussion of systemic therapy options using this terminology should be undertaken in dedicated multidisciplinary meetings to optimise treatment for patients with all forms of PDAC.
Of those patients undergoing intended curative resection, 77% proceeded to adjuvant chemotherapy or chemo-radiation. This means that nearly one quarter of patients who underwent surgery with curative intent never received intravenous systemic therapy in this time period. As a systemic disease in virtually all patients, treatment with systemic therapy should be at the forefront of management of PDAC and measures to improve this figure should be sought.
Treatment for patients with metastatic disease at diagnosis was more limited. 51% of metastatic PDAC patients did not receive any active anti-tumour therapy, of whom 96% died within one year of diagnosis. End-of-life care remains a priority as one-year survival rates of 31% reflect the sobering reality that most patients with PDAC still die soon after diagnosis and early involvement of palliative care physicians is another important goal at which to aim.
Publication date Thursday 15 November 2018
2 minute read
Luc te Marvelde
Linked statewide data provides insight into cancer treatment and outcomes in Victoria
Understanding variations in patterns of cancer care and associated outcomes is instrumental to identifying areas for improvement in outcomes for Victorians diagnosed with cancer. Linked population-based statewide data can play an important role in identifying variations in care and outcomes.
There are various routinely collected statewide data sources, which include relevant data on cancer patients. The population-based Victorian Cancer Registry (VCR) provides comprehensive, accurate information on cancer incidence. Pathology laboratories, hospitals and certain? screening programs are required to notify the VCR of new cancer diagnoses. The VCR includes data on patient and tumour characteristics, including cancer site, morphology, summary stage (restricted to some cancers), age at diagnosis, sex and residential address.
Data on treatment, complications and survival is available as in-patient (VAED) or out-patient (VINAH) activity for public and private Victorian health services, presentations to public hospital emergency departments (VEMD), public and private radiation therapy (VRMDS), and deaths (VDI). These datasets and over 20 others are routinely linked by the Centre for Victorian Data Linkage at the Department of Health and Human Services. Data linkage allows the retrospective reconstruction of treatment pathways, complications and survival for each Victorian diagnosed with cancer. Outcomes for patients can be compared according to age, sex, socio-economicposition, geographic residential location or the health service that provided the treatment. Admissions due to complications in health services other than the health service that provided the treatment are captured. Thus, linked data includes information on diagnosis, treatment and outcome on Victorians diagnosed with cancer and can be used to identify variations in treatment and outcomes.
The use of administrative data for research purposes is often criticised due to its lack of clinical detail and potential for exaggerating complexity of the episode for the purpose of receiving additional funding (‘gaming’). ‘Gaming’ is mitigated by a routine VAED audit process. The lack of clinical details can have many causes. For example, nationally agreed hospital coding rules mean that only selected comorbidities are coded in the hospital data. As a result, comorbidities are underestimated. Further, extracting structured data from pathology reports is time consuming and hence tumour pathology data in the VCR is currently restricted to selected data items for selected tumour streams. Other limitations include the absence of interstate data, the type of chemotherapy received (captured in the Pharmaceutical Benefits Scheme; PBS) and radiology (captured in the Medicare Benefits Schedule; MBS). In some instances, these data limitations restrict the interpretation of the variation and local confirmation from medical records data is needed.
Many of these limitations can be addressed by changing coding practices or current processes. For example, advances in ‘natural language processing’ allows (semi) automatic extraction of structured data from free-text digital pathology reports. This technology will be available to the VCR in the near future. The lack of comorbidity data is now partly addressed with the introduction of new codes in ICD-10-AM Version 9. These new codes relate to 29 chronic conditions which, from July 2015 onwards, have to be coded if patients are known to have any of these conditions. Finally, the DHHS is working towards including PBS and MBS data in the linked dataset in the future.
In summary, a wealth of statewide linked data is available to be used to identify variations in patterns of care and outcomes for Victorians diagnosed with cancer. Given the data limitations some care has to be taken in interpreting observed variations, but at a minimum administrative data can guide prioritisation of local investigations, with the ultimate goal of improving outcomes for cancer patients in Victoria.