A/g Project Manager, Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre
Download powerpoint presentation by Cathie Piggot (PDF 2033 KB)
Introduction by Norman Swan:
So back to survivorship, supportive care, it's much more than what happens in the bunker or in the rooms attached to the bunker and to talk about this is Cathie Piggot who is Acting Project Manager of the Australian Cancer Survivorship Centre which has been supported by the Pratt Foundation, Department of Health Victoria and is also the Project Manager of the Supportive Cancer Care Victoria Project. Thanks very much.
I realise I'm the barrier between you and lunch and hopefully I won't be too long for you. And thanks Abel for the invitation to speak today.
So what I'm going to cover in this talk today is the short discussion about what cancer survivorship is and its definition and the role of the Australian Cancer Survivorship Centre, and introduce you to some tools to assist with the transition and provide a short introduction on the pilot projects that are about to be introduced into Victoria.
So, who are we talking about when we're considering the issues faced by survivors? Professor Currow mentioned yesterday the number of people who have been diagnosed with cancer and the rates of potential years lost. This graph indicates the number of people who have been diagnosed with cancer in the past 23 years. You can see, well you can't see sorry, it's a bit small, but at the top of the breast melanoma and prostate and colorectal incidence, of, and they're the ones with the highest prevalence. So, in the last 23 years, approximately 3.2 percent of the Australian population have been diagnosed and are living with cancer. And as suggested by Professor Currow yesterday, old age is the single greatest risk factor, something for us all to look forward to.
But how do you define survivorship and when does it begin? If I asked you all, you'd probably give me different answers. Perhaps some would suggest it begins at diagnosis. Others might be saying at the end of primary treatment, and others at a five year, after five years of no recurrence. And yet others would say that they're never a survivor, that they actually need to continue to live with cancer and that they don't, they're not surviving. In the definition, is this definition important though? Perhaps it's more useful to actually consider where there are gaps in the cancer experience, and where we may be able to make changes, so that the outcomes for people affected by cancer are improved.
So the Australian Cancer Survivorship Centre was started in 2009, and utilising the perspective that the survivorship begins at diagnosis, the centre aims to improve a range of outcomes for people affected by cancer. The centre is a virtual centre, and is a project team working with clinical providers, medical, nursing and allied health at PeterMac and throughout Victoria to facilitate improved care for survivors. As is mentioned, the funding is from the Pratt Foundation and with that funding the centre focuses on specifically integrating survivorship care across the whole cancer journey, but with funding from the Victorian Department of Health, the centre focuses specifically on improving post-treatment care.
So, what is the impact of the diagnosis on cancer, and finishing treatment on a person? Obviously these vary, but some of the keys issues are about fear of recurrence, ongoing treatment side-effects, late term and long term effects of treatment, some of which we're only finding more about now. Certainly psychological distress, relationship issues, vocational and employment issues and financial and practical issues.
So what are the principles of survivorship care? Where should we focus our treatments? We need to focus on supportive care interventions, rehabilitation and self-management strategies that are specifically tailored to the person's need. We need to also remember promotion of healthy behaviours, so that the person can continue on to live as optimal life as possible. Surveillance in early detection for cancer recurrence and new cancer or late effects is another need for people to be aware of. And particularly the coordination between specialists and primary care providers to maximise outcomes for people affected by cancer is important and we've been talking a little bit about the involvement of the GP in care.
I thought I'd just provide you now with a case study. I've changed the names but this is a real case that was presented earlier this year. So in 2002, Joe was diagnosed with, at the age of 26, with Hodgkin's Lymphoma, localised stage two in the supraclavicular area. Joe lived with his partner, he worked mostly on his own, managing a farm, and yet that was three hours drive from Melbourne. He had no prior history of mental health issues and no significant other history. His treatment was three cycles of chemotherapy and mantle radiation. Whilst having radiotherapy, Joe was reviewed by the psychologist as he was tearful and feeling low. The plan was for a follow-up visit with the psychologist but this never occurred. From 2003 to 2009 Joe had regular visits in the Cancer Service Outpatients, first six-monthly and then yearly. The follow-up visits indicated that Joe was clear of any recurrence but no other issues were ever recorded. Joe moved a couple of times with different jobs and now lived an hour and a half away from Melbourne.
Earlier this year, nine years after his diagnosis, Joe was reviewed in the late effects clinic. Joe's now got two children and married, but he was experiencing tiredness. He completed a supportive care needs screening tool, and self-identified anxiety, depression and suicidal ideation. He discussed this with the nurse coordinator, his feelings of hopelessness and helplessness and that they'd been with him since his completion of treatment. He had not been able to return to his job as a farm manager because of the tiredness and he had difficulty accepting the need to change jobs. He had also said to the nurse coordinator this year that he had actually admitted himself to the psychiatric hospital a year ago because of his suicidal tendency.
So, could we have done anything better for Joe? Could we have improved these outcomes? At the completion of this primary treatment for Joe, it was clear that there were two risk factors identified as per the psycho-social guidelines in the care of adults with cancer. He was young and he was living in a rural area. So even though the nurse practitioner made referral to the psychologist because of feelings of sadness while he was being treated, there was no actual written follow-up as to why no psychology appointments were made. There was no mention of a psychology appointment in the discharge letter and there was no referral to other services or community services. At the follow-up visits which went from 2003 to 2009, the reviews focused on the presence or not of cancer, but not on Joe's supportive care needs. Joe didn't initiate any conversation about his supportive care needs, and because the GP had changed because Joe had moved, the GP's, there was, the address wasn't accurate and so he wasn't receiving any updated information.
So are there tools and strategies that may have assisted during this transition? In thinking of how changes in practice may have assisted, Joe's needs were included - fatigue, his changing jobs, his feelings of hopelessness and suicide, but there are some tools available to assist patients and clinicians to have a discussion. We've talked a little bit about communication between clinicians, but we haven't had so much discussion about communications with the patients. If these tools were available, maybe they might have been useful and improved some of the care.
One of these tools is supportive care needs screening tool, or this is an example of it, the distress thermometer. In May 2009, the Department of Health in Victoria released a document Providing Optimal Cancer Care; A Supportive Care Policy for Victoria. And the Victorian Cancer Action Plan, which was 2008 to 2011, identified that the target was to document supportive care screening for fifty percent of newly diagnosed patients by 2012. As I said, this is an example of a screening tool that can be completed and then a focus discussion is held after the person, this is self-completed by the patient, and a focus discussion held with the patient. But a supportive care screening tool is only effective if the physician is skilled in communication.
The clinician needs to be able to discuss the issues that the person has indicated on the tool. In the case of Joe, a Supportive Care Needs screening tool did actually help to prompt Joe this year to discuss his concerns about the late effect, in the Late Effects Clinic. The Department of Health Victoria have supported Cancer Care Victoria Project, and they’ve developed short videos, or we’ve developed short videos, learning resources, specifically to assist clinicians when discussing supportive care needs. These are available on the website, they’re five minute communication videos and they focus specifically on supportive care needs, easily done in a half hour education session, just to boost people’s communication skills when they’re talking about these needs.
Another tool is the Survivorship Care Plan, that may have been used for Joe and his GP. Survivorship Care Plans are usually instigated at the completion of primary treatment. The Survivorship Care Plan summarises information about the diagnosis, treatment, follow-up care and symptoms to watch out for and the steps to take when you’re healthy. The care plan actually belongs to the patient and shared with the GP, the local doctor and possibly the family if that’s the desire of the patient. The Survivorship Care Plan includes allied health services, used during the treatment, and can also include a list of community referrals made, which may have been useful for Joe and his doctor regarding the use of the psychologist. There’s also on the Survivorship Care Plan a list of healthy recommendations that are included. So for example, for Joe, suggestions regarding the use of Cancer Connect or other local resources may have been appropriate and listed on the Survivorship Care Plan so that he had something to go home with, someone to contact.
The other part of Survivorship Care Plan is a follow-up plan so that he actually knows when, what is meant to be happening - when is he meant to be going into the Outpatients, what sort of test to be looking out for. As I say this, this care plan can also be useful for a GP to also have some understanding of what sort of follow-up is required. The follow-up plan, the clinician needs to have skills in using the follow-up plan also though to under.....to explain to the patient that there may be variations according to the patient’s need, and also they need to be quite specific to the person’s needs so they’re, they’re, this is a haematology example but there’s also other examples of follow-up care for different types of tumour streams.
So, I’ve talked about who are cancer survivors, the tools and strategies that may be useful and I’d just like to touch on some successful, or identify successful survivorship models. So, to assist in identifying effective survivorship models of care in Victoria, there’s been a recent call for Expressions of Interest for a maximum of five pilot projects for $300,000.00 for over two years for each project. The Department of Health in Victoria project proposals need to align with the principals that I’ve listed here, including follow-up care tailored to meet individual needs. Care that’s going to be delivered jointly within the community. There needs to be a strong engagement with consumers. There also needs to be specialist cancer clinician, primary care providers and nursing allied health transition and linkages. And there also needs to be a focus on self-management strategies and effective communication strategies.
So the role of the Australian Cancer Survivorship Centre is to support the development of a community of practice with these pilot project teams. They should be announced in the next month and also the other role is to help with the development of resources that will be required, trying to reduce duplication, and also to provide, continue to develop information resources for people affected by cancer. This is the Australian Cancer Survivorship website. There are already a number of resources on that for patient information and there’s also a number of resources for health professions and also a lot of links for the area. We’re trying to be a bit of the hub and spoke ...
I’d just like to acknowledge Associate Professor Michael Jefford who is a director of the Australian Cancer Survivorship Centre, Pricilla, Nicole and Judy who are my colleagues, and Professor Sanchia Aranda and Rashid Annab who helped with the video communication resource development.
So in conclusion, we definitely don’t have all the answers to improving survivorship outcomes for people affected by cancer, but there are some resources available. What is needed is implementation of the tools and testing of new and innovative models of shared care. We need to keep moving forward. Change needs to happen as survivors continue to tell us about their feelings of abandonment, concerns of recurrence and at the end of primary treatment. And we need to implement strategies to minimise some of these concerns. Thank you.
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So it's a big agenda. What's the biggest gap? Because there's always an alarm bell rings when I hear pilot projects being called for. We are a nation of pilot projects. We don't need any pilot projects. What's the biggest gap?
The biggest gap is just definitely the liaison between oncology services and primary care services. Knowing we’ve got a chronic disease, we’ve got higher incidence of people with cancer, they can’t keep coming back to the oncology service for 30 year’s follow-up, which is currently what happens. We need to make sure we can stratify who needs what care and liaise and work with the community in providing that support.
And what’s going to stop these pilot projects just be whistling in the dark and, you know, they happen and that’s nice and everybody gets a warm glow and it’s not integrated to a forward plan?
What’s going to stop it is probably Department of Health because, certainly in the selecting, there is over seventeen applications. In selecting the five applications that will be awarded, sustainability was a huge key criteria. It was also needing to look at longer term transferability of the resources so it certainly is high on the agenda to make them sustainable.
And do tumour specific groups help here? Because obviously the, you know, take gynaecological cancer for instance, for some of those, the on-going effects can be more than say other tumour groups, you know, like breast cancer for example. And do they help in this matter or not?
The needs of the person are very varied according to the tumour disease, according to the person’s needs, according to their background and culture. I think what we need to do is make sure that we’ve got a range of resources available for people that meet different tumour streams and certainly how we’ve started piloting the survivorship care plans is via tumour stream, because the survivorship care plans are tailored to specific tumours ...
And are the tumour streams in Victoria taking some responsibility for survivorship?
This is, it’s still....
Is this a landmine I’ve set in front of your foot here? No?
There’s early stages I’d say. I think that people are being very keen. People see the need for it and particularly with the backing of the Department of Health in Victoria, it’s been very high on people’s agenda, so I think that they will take a role in it, but I think it’s probably early stages. The other thing we need to do is also link in with what’s already out there, with in particular Cancer Australia’s gynaecological resources that they’ve been developing, eviQ Cancer Institute, they’re all very keen things that we need to link into and will, are doing and will do.
Question (John Stubbs):
Thanks very much Cathie. John Stubbs, Cancer Voice Australia and I declare a conflict of interest because I am involved with the Wellness Centre there. I think the glue that binds everybody in relation to this is cancer. It is not whether you’ve had breast or prostrate or anything so, I think we’d be doing a real disservice if we were going to establish specialist, you know, cancer survivorship. I think we just need to have good clinicians, good links with primary care to identify issues that are common to people with cancer. Certainly they can be tailored a little bit more. So I wouldn’t want us going off developing a, you know, a good survivorship clinician. I think that’s probably not a good use of resources, and there are....
But hold on a second. Surely, there are very different needs that people have, and surely you got to have a degree of specificity, surely there’s a common base to people’s needs but there’s got to be a high degree of specificity depending on what form of cancer you’ve had surely. So for survivorship work to be effective you’re going to have to tailor it aren’t you?
Question (John Stubbs):
Well, I mean there’ve been a number of surveys done and there is a survivorship centre being established in New South Wales, and talking to people there, the link was cancer and it doesn’t matter if you’ve got prostate cancer, you might be on a bike or on a walking machine next to somebody with a gynae or ... so that’s been the link. And yes, certainly there may be some incidences of tailored programs around that because of fatigue and all of those things, but I think, if we’re going to get really, really specialised it might be a waste of resources and I think the collective good that everybody’s putting in might be lost. But with the other survivorship centres going, I think there is, is starting to get a groundswell in relation to these and there’s probably a lot of good data and information that maybe at some time needs to be linked so we can help more people.
Sorry, yeah I agree. I don’t think we need tumour specific, what we need is the tumour stream to be engaging with survivorship but not have specifics, like a breast cancer tumour survivor specific thing. I think that certainly there’s enough commonality that, that.....
My only point is that if you’re too generic in what you offer, you aren’t going to be meeting patient needs, sorry survivor needs.
What we’re offering are resources that can be adapted to the context of where they’re being used, so by having them on the website people can download them, they can change it, they, it’s up to them to use it in the best way for their context and I don’t think any resources we’re developing along with what’s, Adelaide are doing Flinders and also New South Wales are doing, the Cancer Institute. I think people are looking at - or certainly we’re looking at developing resources that are going to be able to then be adapted to the actual health setting. It’s the same as supportive care needs screening, resources that have been developed, they’ve been put on USB memory sticks so that people can then take it to their hospital, put their own name on it, put their own referral to the allied health that’s related to their context and then use them that way as opposed to, I think we had generic ones but then they easily adapted.
Thank you very much indeed.
So as I say, the room’s been divided into two, just make sure you’re on one side of the divider or the other. You got to, I think, have you registered for one or another or do you just go to which one you fancy, is that what happens? Ok, the one you fancy, and we start at half past one. Thank you.
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