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.
Integrated Cancer Services 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.
30 Sep 2019
4 minute read
The Love and Light Lung Cancer Support Group
If you don’t rattle the can, nothing happens. [My wife] Dale was diagnosed with stage four non-small cell lung cancer in 2013, inoperable. We were rattled after [her] diagnosis. We’d been together for fifty plus years of marriage. [A/Prof] Paul Mitchell was Dale’s specialist. He’s a wonderful man and oncologist. I’d ring Paul at home because I didn’t know what to do or where to go—there was no money for lung cancer coordinators. At the Olivia Newton-John Cancer and Wellness Centre there was Tammy Boatman, who was so helpful. In 2014, she asked me to speak at the Olivia Newton-John Gala. It was a big headliners event of old Aussie rockers and I was in a great state of panic. I talked to my friends and I have them to thank for this, they said it’s not about me, it’s about Dale. They were right, so I wrote it and did it and it went over pretty well.
I was talking to an oncologist on the ward about speaking at the gala. She said she was running a seminar with professors and patients to talk about lung cancer and the ramifications of it. So, I went and said something about no funding or backup for patients and asked for a show of hands. Those people and I formed the Love and Light Lung Cancer Support Group. Our first meeting was 11 December, 2014. It was Dr Thomas John, Robin, Briony Squibb from Cancer Council Victoria and four patients and three carers. I was elected group leader, group secretary and group treasurer. We met once a month and our aims were support, awareness and advocacy, which we pursued fairly well.
Lisa Briggs came a year later, three months after she was diagnosed. She was terrified as a young mother with kids. Dale and I tucked her under our wing. The three of us did things together and [we all] became friends. For Lisa, advocacy was the best fit. We also promoted her. She was sellable and appealed to the media. She’s made a difference.
Dale and I did some media, too. I was on the front of a local paper, they interviewed me in a car park in Moama, ‘Ken Bottrell said this and that’. It’s good publicity and spreads the word. The awareness [of lung cancer] is not there. It gets up my nose that the first thing people asked, when I told them Dale had lung cancer, was ‘Did she smoke?’ The thing is, for women with lung cancer, thirty percent have never smoked or had secondary smoke. I got caught out by saying I’d participate for Lung Foundation Australia. I thought I’d look at the proofs of their ads and now I’m in one. I went to Sydney for their End the Stigma campaign.
I worked in the building industry. Everybody smoked as an apprentice. There was also a huge asbestos risk in my time that we didn’t know about. I cut [it], drilled it, sawed it. And there was the Malboro Man—if you didn’t smoke or drink, often to excess, you were considered a bit of a weirdo on a job site. Out of the two of us I wouldn’t have thought it would be Dale to get lung cancer, I’d have thought it would be me. Paul Mitchell has spoken about how there is screening in America if you are at high risk of lung cancer. I’ve had screening as I am high risk. The scan was clear. But there’s no screening for high risk in Australia. We’re told it costs too much. But what about the human cost of a lung cancer diagnosis?
There was an occasion early on at an event where I spoke very plainly about the problems in lung cancer care. I did worry a bit after that first time if I’d gone too far. But Paul [Mitchell] said, ‘No, that’s what you’re there for.’ Consumers can bring a different perspective and they can say things that staff can’t. I’ve also run the gamut from diagnosis to death now and I know the gaps, the giant gaps [in lung cancer care]. When I used to work on a major building project we’d have critical path programming. This branches out and changes constantly, but there is someone to oversee the whole process. We don’t have that in lung cancer care, still. [We’re told] there isn’t a budget for it. But even in the building industry, which is about making a profit, that critical path programming was there.
Dale and I travelled a lot. We had a small caravan. When Dale got ill I thought about putting in a toilet and shower, but it restricts where you can go. We started getting ensuite sites at caravan parks. It’s quite sophisticated in Bright with air conditioning. We spread Dale’s ashes [there]. Dale said, ‘Don’t put me on a mantelpiece.’ We had a family meeting. My son said, ‘Take her to Bright, you two had fantastic times in the caravan park.’ I rang the park owner and he gave us a fifty percent discount, so in the end we had forty people. Dale wanted freedom on the Ovens River. We had a gathering in the evening. I told Dale’s story about lung cancer, fairly briefly. It was a lovely service with a celebration after. We played the Beatles. Dale had a list with Celine Dion on it, too, but I told her that I was drawing the line at that.
My mindset at the moment is to get away from hospital settings, as towards the end of Dale’s life I was in hospital almost every day. Of the four main members [of the Love and Light Lung Cancer Support Group], two have died and Lisa [Briggs] is now working in advocacy. There needs to be support [for support groups], so I was really pleased to hear that the group is being advertised through the Peter MacCallum Cancer Centre (Peter Mac). I probably won’t be going back to it, more doing the handover. I haven’t lost the passion. I’m nibbling round the edges. I’m looking at putting my hand up for an advocacy role, which runs for two years. We’d lobby politicians. I want to carry the message and speak the truth while I’ve got my marbles.
2 Dec 2019
2 minute read
Room 64 podcast, episode 1 (abridged):
Christine and Evelyn's story
Room 64 is the room where mum lived for the last three weeks of her life. It was like a daggy motel room. It had a little bed, a nice en suite, a window in the corner that looked into the chapel. A little fridge and a couple of lounge chairs and that was it. We put in some of her Bulldogs memorabilia. I don’t think it was the bricks and mortar, it was the people in there with her. I was with her every day. Between family and friends and the wonderful staff of the McKellar Centre, she was unbelievably happy in Room 64.
Mum was diagnosed at the start of 2018. People always pricked up their ears when they heard about mum, because she was one hundred years old and with it. The husband of one of the staff heard about mum and smuggled in some whiskey. It made you feel like it was home, it was funny. At times mum would get concerned she would get in trouble for it. It made me feel when I got stressed that I had something to drink, and it was a story to tell. It’s a story of Room 64 and no doubt, everyone who has been in there has unique stories of their own.
Everyone liked my mum. She was very accepting, very happy in her own skin. She was born in Scotland and put in an orphanage. She learnt to knit with two twigs. When they finished knitting they’d rip it out so they had wool to knit with again the next day. She never had much. She said the orphanage was cruel, but in the next sentence she’d say they taught her how to knit and she was grateful for that. She had lots of friends, people were always popping in. They’d sit round the kitchen table with tea and scones. That was mum’s idea of a good time.
Mum tells the story of my dad, George, coming to visit her, and his head would hit the door. He was tall and she was tiny. He worked at the meat works in Footscray and they lived in Droop Street. She didn’t have an interest in football until Dad, then we all bled red, white and blue and have done ever since. It was clear to anyone who walked into Room 64 that the Western Bulldogs were huge… very seldom would the doctor talk to my mum about anything medical. He’d ask her how the Bulldogs did on the weekend. That made such a difference to her. She wasn’t remotely interested in anything medical.
Mum wanted to stay at home. She was becoming more frail and needed more help getting in and out of bed. I suspect she was in a lot of pain, although she would never say that. She woke up one morning and said she needed to go to hospital. The relationship I had with Barwon Health was so helpful. The nurse who was coming that day anyway took over. A whole weight was lifted off my shoulders. By 3pm she was in hospital. The doctor told her she could go home and come back any time. She was worried if she left the hospital she wouldn’t be able to come back, so that was very comforting to her.
I’d park round the back [of the hospital to visit] and cut through the garden. It was winter and I could always see my footprints were the first in the grass. She was always happy to see me and we hung out together. I read lots of books. Mum would hop in the wheelchair and we’d go for a walk. She’d sleep a lot. I was adamant I’d be there when the doctors were, so I knew what was going on. People were always visiting.
We were pretty devastated, but people would say things like, ‘Well, she’s a hundred, she’s not going to be around forever’. And we’d say, ‘But she’s a pretty impressive 100-year-old, she’ll be around as long as she wants to be’. I was sad and angry (about the cancer diagnosis). I wanted my mum to just not wake up one morning. You get to a hundred and some doctor comes in and tells you you have cancer—I just don’t think that’s right.
I felt like I got a complete package from Barwon Health; one phone number, 24 hours a day. The focus was my mother and us as her family. The carer would check on her health concerns, check she had what she needed for medicines, and give her advice on how to do things. Her feet were dragging and they gave her a tip to lift her feet. She loved that advice—a small thing. When mum said she was finding all her visitors a bit much, the carer told me it was ok to put a note on the door telling people to come back later. I didn’t know I could do that. They were also conscious of not wanting to invade her space. Because in reality she was the same person coming out of hospital as she was going in. The only difference was she’d been diagnosed with cancer. It’s really easy to get caught up with being ‘Evelyn Brooks with cancer’, when she was just ‘Evelyn Brooks’. The support was about keeping her as Evelyn Brooks—cooking, knitting, friends popping in. And palliative care enabled us to do that.
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.
Melanie Davies and Jacqui White
Room 64 podcast, episode 4 (abridged):
The future of palliative care
We need to have a much greater role in working with our community and in engaging the community in conversations around death and dying, and end-of-life care. It’s not something that should sit solely with a specialist palliative care unit. The community should be involved.
Community members don’t have that comfort level because it’s often the first time they’ve had someone they love die. So, the opportunity to develop literacy around dying isn’t there. ‘How do I manage the emotions?’ They haven’t had the opportunity. I think working with the community will make this better.
Someone has ‘passed’ or ‘gone to a better place’ are the two big euphemisms. Community has been disengaged with death and dying—the language is reflective of that. Particularly with children, we say, ‘You’ve "lost" someone'. Well, how can you "lose" someone? We aren’t comfortable with death and dying, probably because we are all going to do it and it’s scary. It would begin with story time at the library, engaging with children, talking with primary and secondary school children about death and dying. What does it mean when we lose someone significant to us? It’s also about having fun with these issues, because it’s the one thing we are all going to do. We are all going to die at some point. We have a one-to-one likelihood of dying. It’s about starting that conversation, through stories, through movies, through podcasts, to engage with communities.
There are a lot of people with the same mindset as me around how we look after our dying in the community. There are Compassionate Communities around the world. Compassionate Communities are communities who have the confidence, knowledge and support to develop their own mechanisms to develop their own sense of caring in the community. ‘Gather my crew’ is a local website that puts people in touch with those who can support them. This might look like sending out a message, ‘I need to get my daughter to netball training by 6pm tonight’. Someone messages back, ‘I can take care of that’. Or, ‘We need dinner, but not lasagne because we’ve had it three times this week.' It allows people to support other people in the way they feel comfortable supporting them.
You have great ideas, but where do you start? ‘You don’t need to own it’ is a motto to come back to. It doesn’t have to be Barwon Health-run and driven. You just need to start having conversations. Any interested people in the community? Meet for coffee and talk about the gaps in community around looking after people.
We’ve been socialised into thinking death and dying is something that happens somewhere else. It would be great to not be a walking conversation stopper. I feel like I have been one my entire professional life. To have people go, ‘What a great thing you do, that must be a privilege,' that would be great. Now, if someone comes up to me at an event and asks what I do, their faces fall or they say, ‘That must be sad’. Or, ‘You guys are angels'—trust me, we’re not. We do the work we do in palliative care because we love doing it.
Melanie Davies is a clinical nurse consultant and Jacqui White is the program manager 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.
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)
30 Sep 2019
2 minute read
Dr Sharon Licqurish
Improving clinician–patient communication
Effective communication between people with cancer and their clinicians has been shown to reduce stress, improve pain control, increase adherence to treatment, improve quality of life and help people understand their diagnosis, treatment and prognosis. It is also essential to shared decision making. When the 2013 Victorian Cancer Experience Survey (CPES) found that people undergoing treatment for cancer were less than satisfied with communication from their health care providers, many cancer services prioritised programs to improve communication. Subsequently, communication has improved—the 2015–2016 CPES found that people were more likely to receive written information about their tests and operations.
A 2015 Western and Central Integrated Cancer Service-funded study was conducted at Western Health that aimed to gather evidence for the most effective communication strategies available to facilitate communication with people with cancer. The original study found an enormous number of primary studies of communication interventions, which were synthesised into systematic reviews. We created a narrative synthesis of those systematic reviews which were provided in a report which concluded that:
- There is some low-quality evidence to support the use of websites to improve satisfaction and knowledge for people with cancer.
- There is limited evidence to support educational interventions, however they may be effective in reducing fatigue, medication adherence and pain.
- The effectiveness for communication skills training for clinicians is contentious because they were only tested in simulated situations and not evaluated in real-world settings.
- The evidence for the use of patient reported outcome measures, summaries or recordings of consultations and decision aids to facilitate patient decision making is scarce and or/low quality.
- Specialist nurses may be useful as a source of support and information however the impact of Australian breast care nurses on patient outcomes is limited.
In 2019, CA: A Cancer Journal for Clinicians published a revised and updated section of the original review with a focus on tools for physicians to use to communicate more effectively with people with cancer <https://onlinelibrary.wiley.com/doi/10.3322/caac.21573>. This discrete project was a collaborative effort by researchers and expert cancer clinicians from Monash University, The University of Melbourne, Peter MacCallum Cancer Centre, University of Western Australia and the University of Adelaide. We found 11 systematic reviews, reporting results from 84 primary studies involving more than 15,000 participants that reported synthesis of evidence for tools used during consultations with physicians and cancer patients.
We found that patient reported outcome measures, completed by the patient and discussed and/or reported to physicians, can improve pain and symptom control and encourages use of allied health services and referrals. Question prompt lists were also found to be helpful to promote discussions and increased numbers of questions asked, without increasing consultation time.
As consumer James commented, 'The question prompt list was the best bit of information I have received as it enabled me to sit at home and think of all the questions that I wanted to ask.' Question prompt lists can encourage people with cancer to prepare questions in advance of consultations and empower them to initiate conversations about the things that are important to them.
We are currently working to update the evidence for nurse-led interventions, electronic and e-health interventions and communication skills training and plan to publish in 2020. Until then, it is now time to translate this evidence we have into clinical practice to improve cancer services in Australia.
Dr Sharon Licqurish is a research fellow in the School of Nursing and Midwifery at Monash University. She works closely with Professor Johnson (Vivienne Bullwinkle Chair of Palliative Care) and Research Director Associate Professor Bugeja. Dr Licqurish is a nurse and midwife with a PhD.
Her current projects aim to evaluate and implement quality care to improve end-of-life care, residential aged care, dignity in residential aged care, humanitarian services and palliative care services. She also leads research into interventions for prediction and timely diagnosis of postpartum haemorrhage.
Dr Licqurish’s post-doctoral research is broad and includes improving cancer awareness and detection in culturally and linguistically diverse communities, women’s health and midwifery practice and end-of-life care. She has led numerous systematic reviews about communication with people with cancer, cultural beliefs about cancer and the role of community health workers in lower-to-middle income countries.
Monash University bio <https://research.monash.edu/en/persons/sharon-licqurish>
2 Dec 2019
2 minute read
Regional carer perspective
Something that ate us up at times after Graeme’s diagnosis was surgery revealed his tumours had only just attached to the vein and spread. His initial scan had an obstructed view, but we were told he didn’t have cancer and he didn’t need more tests. It was only because a young doctor took the initiative that Graeme underwent another test and we got the diagnosis. But those weeks we lost in between could have been the weeks that saved him.
There was no surgery in the country. With pancreatic cancer you need to go to the best—to a surgeon who’s operating all the time. We went to the one recommended to us in Melbourne. When we approached our local regional hospital for Graeme’s care, we had to go through an emergency admittance every time. We had to tell our story every time to every single person. It was exhausting to have to keep repeating it.
We constantly asked our local hospital if they could contact our team in Melbourne for advice, but we’d be told the local team had to assess Graeme. The local team would say they might contact our Melbourne team. But a lot of the time we’d contact Melbourne weeks later and they wouldn’t know Graeme was in hospital. It never gets passed on. There’s some real lack of communication—where it comes from in the system I don’t know. Whether it’s at a government level or not.
We were told that we could do shared care, but then we were informed by a local oncologist that Graeme could only have one oncologist. We were later told it was because Medicare can’t be billed for two oncologists. I don’t know if that was the issue preventing shared care—if it’s to do with government rules and regulations. But from a patient perspective it just seems obvious that shared care for regional patients is necessary.
Graeme was admitted locally regularly but couldn’t have the same oncologist—it was whoever was on duty that day. We’d often be discharged on the basis that they couldn’t do anything for us, so we’d have to drive to Melbourne anyway. It got to the point where Graeme wouldn’t want to go to our local hospital. He’d say, ‘We know what’s going to happen.’ It was a battle – it was the hardest part of it all, that we couldn’t have a local oncologist.
It became a very difficult situation for us – we would have to give up our Melbourne care team to get a local oncologist for adjuvant chemotherapy. We stayed with Melbourne and it’s lucky we did because Graeme got a second tumour. In Melbourne, the oncologist works out of the same room as the surgeon, so Graeme was in surgery the next day. If we’d gone regional, how long would it have taken the oncologist to talk to a surgeon and for us to get an appointment?
Going locally would also have cut us off from being put forward for clinical trials, and giving up that hope wasn’t something we could do. Graeme was rejected from a trial, and with hindsight, he said he would have given up Melbourne for local care. But you don’t know that at the time. After Graeme died, I was angry. I wanted to do something about it for other people, talk to someone in government. An earlier diagnosis could have saved him. Now, when people have reflux symptoms that don’t improve on medication, I tell people to go to the doctor. There needs to be early detection, early diagnosis—more awareness out there.
For more information on the Pancare Foundation Put the Spotlight on Pancreatic Cancer campaign, visit their web page at <https://www.pancare.org.au/fundraise/put-spotlight-pancreatic-cancer/>
This article was first published in the VCCC alliance Nov 2019 newsletter. To subscribe to the VCCC alliance newsletter, visit <https://www.viccompcancerctr.org.au/contact/subscription/>
Victoria’s excellent cancer outcomes are the result of good management, not good luck?
One of the highlights of the VCCC Research Conference in September was the Great Debate.
Amid the wit (and occasional slander!) of the debate, the arguments revealed the complexity of the topic – further demonstrated by the difficulty both teams had staying on their side of the debate!
On the Good Luck side was Professor Mark Jenkins, Director of the Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health and Centre for Cancer Research at the University of Melbourne, and on Good Management was Professor Kate Drummond AM, Director of Neurosurgery at The Royal Melbourne Hospital and Head of Central Nervous System Tumours for Parkville precinct cancer services. Reflecting on the debate, the two agree that while Victoria has some of the best survival rates in the world, outcomes are not the same for all Victorians and there is more to be done.
“There is no doubt good luck plays a role,” says Mark. “Victoria is a small, wealthy state with relatively high education levels and comparatively low barriers in terms of distance and access for rural and regional patients. This is a distinct advantage compared to other larger and more sparsely populated states, and even international comparisons.”
Mark also observes that good luck is a key determinant for individual outcomes. He points out that it matters a great deal where you live, and it matters what your cultural background is, as well as your socio-economic status.
“Better outcomes correlate with higher screening participation rates and earlier detection,” he said. “There is a clear alignment with areas with higher education levels, higher socio-economic position, areas with lower proportions of culturally and linguistically diverse communities, and more specialised and dedicated cancer resources.
“For individuals this means your cancer experience is, at least in part, a matter of good luck. Disparities like these are not unique to Victoria, but in a state with such outstanding overall cancer care, it presents a major challenge to improve access and equity for all Victorians. This is a clear opportunity for the VCCC to work collaboratively with the government and health care networks to apply creativity, technology and innovation to overcome this entrenched problem.”
On this point Kate Drummond agrees. “Victoria, especially Melbourne, and more specifically Parkville, has an extraordinary concentration and culture of innovative bio-medical research, ongoing investment, world-class education and talent retention. This is a result of long-term investments by government, philanthropy and institutions dedicated to excellent health care outcomes,” she said.
“This is a clear demonstration of good management. The survival rates where there is this concentration of resources is no accident – we know how to do this. The issue is how we get this standard to more people, more of the time. Resources are an obvious limitation so efficiencies and collaborations are critical.”
Kate says Victoria’s excellent screening and early detection initiatives are also key to the state’s good results, with early detection a particularly important factor in high survival rates.
“The Quit campaign; Slip Slop, Slap and the screening programs for breast, bowel, cervical and prostate cancers are demonstrations of Victoria’s track record of good management. We are on track to eliminate cervical cancer by 2040. That will be a world first – only possible when the system is working.”
Kate also cites the development of Optimal Care Pathways – evidence based, system-wide approaches that guide best practice approaches to treatment - as another achievement of good management in the state.
“We have a Victorian Cancer Plan and innovations like the VCCC and MPCCC that are building new silo-busting collaborations. That’s good management. But we can do much more.
“Screening participation varies across the state and could be much higher still, especially in bowel cancer. From there we need to ensure the system can cope with follow-ups for positive screening tests. We have banned sun beds as they were proven to cause cancer and yet we still sell cigarettes.”
Kate also believes we should take a bigger picture view.
“There is too much tumour stream focus,” she says. “We need to look at the whole system which would allow for more pragmatic decisions to benefit more people. That might mean making tough decisions for the greater good,” she said.
Holding the cards
Victoria’s achievements as a world leader in cancer survival can be attributed to a multiplicity of factors – some luck and much good management.
As the Victorian Government develops its next Cancer Plan, we have even more cards in our hands. We have only just scratched the surface of the potential for telehealth and digital care to help equalise access for rural and regional areas. VCCC collaborations have driven new access to health services data that will help measure and locate inequities and opportunities. We have rapid access to genomics assessments to sharpen treatment targets as well as novel approaches to boost clinical trials participation. And immunotherapy research is bringing a revolution in therapeutic options.
As cancer survival continues to improve and we increasingly treat it as a chronic disease, perhaps the next debate will be whether we should look beyond measures such as five-year survival to gauge success. Could return to work rates be more useful as the health system adapts to deal with new scenarios for patients with cancer around survivorship, quality of life and wellbeing?
The ultimate goal is to take good luck out of the equation and work towards equity and better outcomes for all.
VCCC Research Conference Great Debate teams
Facilitated by Associate Professor Roger Milne, Cancer Council Victoria
Professor Eva Segelov, Monash University
Professor Robert Thomas OAM, VCCC Deputy Chair, Chief Advisor on Cancer to the Victorian Government
Professor Kate Drummond AM, The Royal Melbourne Hospital
Helen Farrugia, Victorian Cancer Registry
Professor Mark Jenkins, The University of Melbourne
Professor Mark Rosenthal, Peter MacCallum Cancer Centre