Shared care benefits patients, GPs and the health system, but it’s not standard practice.
A formalised shared care model takes a bit of setting up, but it’s worth it, Australian experts say.
Cancer survivors require ongoing medical care, including surveillance for potential recurrence and managing the side effects of their treatment. But survivors can also face a variety of other issues that are often challenging to identify and manage.
“[These issues] can include a broad range of physical, emotional, psychological, practical issues that are very common, such as physical issues like fatigue, neuropathy, pain, worry about cancer coming back, issues with finance, issues with getting back to work,” says Professor Michael Jefford, a consultant medical oncologist at Peter MacCallum Cancer Centre in Melbourne.
The fact that cancer survivors are more vulnerable to other common comorbidities further complicates things.
“People commonly have high blood pressure, diabetes, asthma ― that tends to be neglected by oncologists because it’s not their focus,” says Professor Jefford.
“They actually have a higher risk of dying as a result of comorbid disease than people without cancer. So you might be cured of your breast cancer, but be at very high risk of dying from cardiovascular disease.”
GPs often take responsibility for addressing and managing these long-term issues. However, there are still aspects of care that fall through the cracks: earlier this year the RACGP reported that two-thirds of cancer survivors have unmet care needs.
To Professor Jefford, this suggests that the current model of care isn’t fit for purpose.
“The hospital’s saying, ‘well, that’s not my job, it’s the GP’s job’, and the GP is saying ‘surely the cancer hospital is doing it, right?’” says Professor Jefford.
“We haven’t necessarily done a good job of educating everybody about the fact that we know that people have a higher risk of dying as a result of having had cancer.”
Simple on paper, messy in practice
Better communication can go a long way to addressing these issues, but it’s a fine line to walk. Information sharing between hospitals, specialists and GPs can be stellar – but it can also be woeful.
Formalising shared care arrangements can make the job easier, according to Sydney GP Dr Elysia Thornton-Benko, who has frequently been involved in informal shared care arrangements.
Dr Thornton-Benko’s current clinical practice is part of the Central and Eastern Sydney Primary Health Network, which has a program called GPCanShare. A collaboration with Sydney Local Health District, South Eastern Sydney Local Health District and St Vincent’s Hospital, the program is facilitated by dedicated integrated nurse coordinators and relies heavily on timely communication.
“In the past it was very siloed. And even if the GP had played a role in helping the patient get the diagnosis and referring on to a tertiary oncology team, they would then never hear another thing,” Dr Thornton-Benko tells Oncology Republic.
“The patient would end up with an issue and come to the GP, and the GP would have no idea what’s going on – not because they don’t have knowledge or experience, but because they haven’t been updated. They look pretty stupid and everyone loses confidence because they don’t know what’s going on.”
But when the arrangement is formalised, communication is timely and roles are clearly defined, that doesn’t happen, according to Dr Thornton-Benko.
“If the GP knows how often [they] should be seeing them, or [that they] need to organise an echocardiogram every five years and cc the oncology team, [then] they will do that.”
The information needs to flow both ways, she says. GPs have details about family history, risk factors and comorbidities – crucial information that can be passed on through a referral.
Proper planning prevents poor performance
Survivorship care plans are an integral part of shared care in survivors, Dr Thornton-Benko says.
“That’s key for long-term post treatment shared care. And no, it is not completely standard. So sometimes the patient just gets clinic appointments every year, booked with the oncology team. They get some letters to the GP here and there. But it is not standard. It’s improving, but we need better awareness that this is a really important part of long-term care.”
Cancer Australia has templates for follow-up and survivorship care plans for low-risk endometrial cancer and early breast cancer.
“It’s empowering for the patient and the GP and it helps people stay in the community and be healthier. It’s important to have contact so you know you can link back into the oncology teams. But siloed tertiary care is not optimal for holistic, long-term quality of life,” says Dr Thornton-Benko.
The Australian Cancer Survivorship Centre (ACSC) recommends that “GPs should be involved as part of the shared care team from the point of diagnosis onwards” and there are some other places in Australia where formal shared care has been set up, including the South West Sydney Local Health District Early Breast Cancer Survivorship Shared Care Program and the Murray Primary Health Network Cancer Shared Care project (Victoria). But it is not standard of care, and in most cases it has to be initiated by a practitioner involved in the patient’s care.
Professor Jefford says more awareness is needed of common survivorship issues and the shortcomings of current models of care.
“There are other models, they’re safe and effective and they have a really important place. We’re not saying that everybody will have shared care or GP-led, nurse-led care, but a significant proportion could.
“We could do a better job of engaging with GPs and reinforcing the important role of the patient’s GP from the very beginning,” he says, referring to the hospital team.
“We could just start with asking people, ‘Do you have a GP?’ That’s an important first thing. And, ‘What’s your relationship like with your GP?’
“We also need to be providing GPs with straightforward, brief information about what we’re asking them to be aware of, and how they might manage particular situations and circumstances where they might need to liaise with the hospital about particular issues.”
Anyone can start the conversation
A number of years ago, Professor Jefford conducted a trial sending GPs a two-page fax when their patient was about to start a particular chemotherapy regimen, with information about the specific treatment, its side-effects, the recommended management and contact details for hospital staff.
“This is something that should be really easy to operationalise. We know we can scale it and do it in a relatively straightforward way that doesn’t tell GPs stuff they already know,” says Professor Jefford.
Dr Thornton-Benko agrees that oncology teams can play an important role initiating shared care arrangements.
“Even if there’s not a formalised shared care arrangement yet, oncology teams can recognise that the integration of primary care is so important, and mention to the patients that they need a regular GP, or at least a regular GP practice, and we’re going to keep in contact, and keep them updated,” she says.
Patients can request that their oncology team keep their GP in the loop, copying them into investigations and keeping them updated. And GPs can also make contact with the oncology team to request the same, Dr Thornton-Benko says.
But she says for shared care to flourish there needs to be a person who’s responsible for that timely communication, taking the onus off GPs and their staff to chase results.
Appropriate remuneration would also help improve the uptake of shared care programs.
“It would be, in a perfect world, lovely to have item numbers for cancer survivorship, but I think we’re probably a long way off that,” says Dr Thornton-Benko.
“However, we now do have the Level A, B, C, D, and now E, so there are at least item numbers based on time, which we absolutely can use without issue.”
Additionally, ensuring that cancer survivors’ needs are met in terms of exercise, nutrition, psychological care and other services is difficult when they are only entitled to the same five allied health and 10 mental health subsidised sessions yearly as everyone else.
“There are chronic disease management plans that can help. They are not perfect. That would be an optimal thing for the government to look at,” Dr Thornton-Benko says.
Flinders University Associate Professor Carolyn Ee, who works as a supportive care GP in Chris O’Brien Lifehouse cancer centre, is currently conducting a national survey on GP comfort with providing cancer survivorship care.
Communication and trust
Shared care was the better option, Professor Ee tells OR, not because it’s a way to push patients onto GPs, or because GPs have more capacity to look after them than tertiary centres.
“We should pursue it because it is better value and something that many patients actually prefer,” she says.
The idea that shared care is valuable and desirable is partly borne out in Australian trials of shared care for patients with colorectal cancer, published last year in The Lancet, and prostate cancer. Another trial into shared care for breast cancer patients is currently underway.
Speaking at a recent webinar hosted by the Caring Futures Institute, Flinders University in partnership with Cancer Australia and PC4 (The Primary Care Collaborative Cancer Clinical Trials group), Mr Eric Yeung, president of CanRevive, an organisation that supports Chinese-speaking people with cancer, says that the people he supports are looking for communication and trust.
“I’m old school. I still call my GP the family doctor,” Mr Yeung says. “GPs, especially those that can speak the same language, play an important role in addressing the two aspects of communication and trust.”
“CALD (culturally and linguistically diverse) patients are more likely to discuss openly with their GP and clam up when they see the specialist, especially when there is the need of an interpreter. So the GP plays a very important role in bridging the gap in communication and building trust, which affects the decision of the patients,” he says.
“We would be advising patients to go talk to the GP [and] ask the GP to teach them what to ask their oncologist. A lot of cancer patients in the CALD community are either too embarrassed, too afraid or don’t know what question to ask or to express what is happening to them.”
Shared care is not a novel idea, as Dr Thornton-Beck pointed out. GPs do it a lot, and everyone is keen to make it standard of care, she says.
“It doesn’t have to be complicated. It can be just simply timely, updated communication. These things are not expensive to run. The powers that be need to recognise the value and how important it is keeping people in the community. They’re actually going to save money in the long term, and people are going to be happier.”
