Twenty patients, four carers and 29 health professionals from across New South Wales were recruited into the study. It was not possible to determine the participant response rate as clinicians did not record the numbers of participants invited. All oncologists, surgeons, nurse practitioners and GPs who were approached consented to participate. Thirty-three percent of care coordinators approached consented to participate. Patient characteristics are shown in Table 'Patient and carer characteristics' and the health professional roles are illustrated in Table 'Health professional roles'.
Patient and carer characteristics
Qualitative analysis revealed the following barriers to effective care coordination.
Recognising health professional roles and responsibilities
Several participants acknowledged confusion about the roles and responsibilities of the different members of the health care team involved in their care.
"Particularly groups of patients who go from surgeon to medical oncologist, to radiation oncologist, they're often uncertain who's actually looking after them." [Cancer Nurse Coordinator]
When patients and carers were asked about the responsibilities of individual members of their health care team, several recognised that there were so many people involved that they could not remember exactly who did what. Others conveyed some confusion when asked about individual responsibilities.
Researcher - "Who was in charge of informing you of the steps involved in your care?"
Carer - [Care coordinator X] was responsible for explaining things...."
Patient -"I would have said [Surgeon X]..."
Confusion surrounding the care coordinator role was especially apparent, not only with patients, but other health professionals. It was highlighted that such confusion had lead to limited referrals to care coordinators from the patients' health care team, as well as patients not utilising that resource when a referral was made.
"The breast care nurse gave me her phone number in the pack of information, but she didn't say that I should call her if I had any questions or concerns." [Patient]
Coordinator 1- "...not even using the word care coordinator - because I don't think that our patients actually know we are ----
Coordinator 2 - No, they think I'm the doctor's secretary....
Coordinator 3 - Yes, that's what they think too - they think I'm a secretary. A lot of them don't realize - if you say care coordinator, they may not understand that term....."
"...the breast care nurse does a lot of the care coordination but she's called the breast care nurse, and the colorectal unit's got a care coordinator but she only looks after the surgical side of things. They may come and see the patient when they are having chemotherapy but that side of the journey is really coordinated, if you like, by the medical oncologist or the chemotherapy nurse treating the patient." [Chemotherapy Nurse Practitioner]
"That hasn't happened (early referral to a care coordinator)in my position for a number of reasons, I think it's partly because the position is not well understood, and the value of the position is not understood." [Care coordinator]
Another issue that was raised about care coordinators was the potential for their role to cause conflict with other health care professionals, such as GPs, who often have a longstanding relationship and familiarity with their patients and see themselves as the coordinator of their patients' care.
"....there's been a lot of resistance to coordinators because GPs see themselves as the primary care coordinator - 'Why do you need someone else to do the job?' What I've found though, is once the coordinator helps them with a patient and they actually discover, 'Well, this is what the benefit is to my patient and to me', generally they're on the phone a lot more. So if they've got something that's difficult they'll make that referral and it will happen." [Care coordinator]
Care coordinators noted that they wanted to promote their role within the community to create a greater understanding and increase patient referrals, but often lacked time to do this properly and also feared an opposite problem, being overwhelmed with referrals.
"Again, the difficulty with my particular position is that I would be out much more proactively advocating and advertising the role to GPs and communities but the position is time-limited and that raises an expectation which would not be possible to meet." [Care coordinator]
Implementing comprehensive multidisciplinary team meetings
Health professionals noted that the multi-disciplinary team (MDT) meeting is now considered an integral component for providing coordinated, collaborative care. The MDT meetings aim to allow different clinicians to discuss treatment options, and offer alternatives to treatment paths that have been chosen. They should also assist in clarifying roles and simplify the clear communication of roles and responsibilities to the patient. These meetings however, are not being implemented as consistently or successfully as recommended. There were several reasons presented as to why this is so. These included time constraints, lack of support for meetings, logistical issues in trying to get all members of the MDT together at the one time, large geographical distances between team members, staff shortages in key disciplines such as oncology, a lack of administrative support for these meetings and dominant personalities limiting open discussion.
"Some of our specialists feel that everyone should be discussed, but time constraints mean that they can't be, so we need to be selective. We need to stick to those patients when the discussion is determining whether or not they are to have further treatment." [Care coordinator]
"....we have four surgeons in our hospital, one of them comes to most meetings; one of them comes to a fair few; one comes to hardly any and one has never been, but at least we know he is never going to come." [Care coordinator]
"Our MDT meetings sometimes have dominant personalities that just keep talking - dominating the conversation. Sometimes they're sharing ideas, but you have to make sure that it is the presentation of the case and allowing equal contribution, not somebody talking about a case and riding rough shot over everybody else!" [Surgeon]
Transitioning of care: Falling through the cracks
Patients who received treatment at different centres reported a lack of communication and effective referral between these centres, particularly from large urban centres of expertise back to the local services from which patients sought support. Health professionals stated that patients often don't get referred back into local support services they need when they have sought treatment elsewhere and it is then left to the patient to present themselves to local hospitals or support services.
"Communication gets messy, no one quite knows what's going on and a patient can fall through the gaps in terms of the treatment plan. Or they're not able to come here, and then things get messy again as people near them geographically haven't got to know them. That's a particular issue with things like mesothelioma, where people come here because there are experts here, but then it's vital to try and communicate back to their local centre and visa versa." [Care coordinator]
"If people access specialist care outside of our area then that's obviously a difficult part in either picking them up when they come back, or follow-on care and again for a rural area there's a number of metro-based specialists that hold clinics in X, so the path is people get referred to them cause they can see them locally but then they're taken away to access care..." [Care coordinator]
Limited links between private health care and community sectors was another barrier discussed. Many clinicians stated that there was a lack of communication and coordination between the public and private sectors.
Inadequate communication between specialist and primary care
The barrier most frequently mentioned by health professionals was inconsistent, delayed and incomplete communication amongst the health care team, particularly between family physicians and specialists which inhibited the delivery of coordinated patient care. Family physicians noted the delay in delivery of diagnostic findings, treatment, complications and follow-up hindered their ability to provide appropriate advice to patients when they approached them in-between visits to their hospital healthcare team, or when they had completed surgery or other adjuvant treatments. This situation was often exacerbated by not knowing who to contact in the hospital care team to get the information required. Family physicians also identified that they lost touch with their patients while they were having specialist treatment.
"...The general practitioner [GP] is probably one of the most important, but often the last to be notified of different things. So if the patient is discharged from here on Monday and has a problem on Tuesday, rocks up at the GP's office, they have no idea what's gone on... We're aware of that and we try to minimise those events, but there's always problems with communication." [Care Coordinator]
"I think probably one of the real challenges for GPs is that we often lose contact with our cancer patients during the treatment phase. They're so busy being seen by the oncologist and the hospital team, the radiotherapist, the surgeon and so on, we tend to lose touch with them. And that can be for quite a long period of time. It's not uncommon and then they come back to you and its awkward then trying to pick up the pieces." [General Practitioner]
"...some patients, especially if they're older, they often don't know a lot about their own care plan, and if there hasn't been a good record of that in their notes, if there hasn't been good communication from the hospital, it can be really difficult to try and get your head around that. I mean you have to go back through various letters and try to work out 'When was this patient diagnosed? What stage are they up to in their illness? When were they last seen?"' [General practitioner]
Inequitable access to health services
A) Rural/regional disadvantage
There was consensus amongst all participants regarding the inequity of health service access across Australia. Concerns were expressed regarding the acute lack of available support to rural patients, due to limited health care providers and local community support services in these areas. Lack of available specialist health care was seen as a major factor in delayed diagnosis.
"I was living with a friend 275 kilometres from the only known (to me) treatment centre - site X. Results indicated some form of cancer but were inconclusive. I then had two trips to site X, 550 km return journey from home for bone marrow tests." [Patient]
"People with cancer & their carers in rural communities are forced to face additional issues such as; relocation to metropolitan centres for lengthy specialist treatment, being away from family & friends & other support networks whilst undergoing treatment and meeting hefty travel and accommodation costs." [Patient]
"I had a patient recently, who ended up needing a biopsy, and the GP couldn't do it, the referring specialist in the town didn't do it, so then the patient had to come back to us [metropolitan centre]." [Care coordinator]
"There is a lot of help at site X but none out here in the bush." [Patient]
"So it's delayed care, delayed diagnosis, delayed treatment, and they get worse prognosis because of that, I'm sure they do." [Surgeon]
"The remoteness and the lack of resources is a problem throughout the entire country, and with the increasing skills shortage, I'm not sure how that's going to be remedied. Trying to provide the same service to Mrs Jones here [in Sydney] as Mrs Brown out at Broken Hill may not be possible with the limited resources and skilled personnel..." [Surgeon]
Location also influenced the roles and responsibilities of health professionals. In metropolitan and regional areas, most care coordinators were tumour specific and able to provide quite specialised care. In contrast, care coordinators in rural areas often had to deal with multiple tumour streams including palliative care, spreading their resources over a greater number of specialist areas and patients.
"I think that's the hard part for rural people, it's not streamlined, it's not just breast [cancer], it's breast, colorectal or whoever turned up in your centre, you're doing everything." [Cancer Nurse Coordinator]
"...one girl, X, said sometimes she takes on all the disease groups, because she's the only one that covers quite a large area, and she said some people would benefit from the service, but they die before she sees them." [Care coordinator]
B) Public and private care differences
Whilst both patients and clinicians recognised that patients could enter the private hospital system without delay, there was perceived to be a much lower level of supportive and psychosocial care available in the private, compared to the public system.
"....to get in and get treatment, to have surgery, you can get into the private system pretty quickly, the waiting lists in the public system are quite long. But then there's a turnaround where once you've had your surgery, the level of (private) support after that doesn't exist. So there are no dieticians or physios or allied health support to help patient's post-surgery, whereas in the public hospital system there are." [Cancer Nurse Coordinator]
"Oh, you are a public patient? And you're getting all that attention? That's good..." [Patient]
"Yes, in the private I didn't get any [psychosocial support]..." [Patient].
Managing scarce resources
Participants identified an under-supply of various health care professionals throughout Australia, but what was of particular concern was the situation in terms of general practitioners and surgeons. The current general practitioner (GP) shortage within Australia was raised as a barrier to effective care coordination that could adversely affect patients' care across their entire cancer journey. This shortage places pressure on existing GPs who have to manage large patient volumes. It was highlighted that although the shortage is Australia-wide, it was critical in rural areas.
"But, normally if you want to see a GP, you book in a month in advance. I can't get in to see a GP when I'm sick, it just can't happen....." [Patient]
"We are forever saying that they need to get into their GP and they say "I can't get into them", so I ring the GP or the receptionist, and get them in on the day or they end up in accident emergency. So, I think we need more GPs up here." [Care Coordinator]
The increasing number of patients accessing cancer services limited the care and support health professionals felt they could provide their patients. Limited time and resources also tended to shift the care of patients to alternate health professionals. The GP shortage in particular adds to the workload of care coordinators, who are often contacted by patients with health concerns which should be addressed by their GP. Care coordinators are actually perfectly placed to assist and alleviate issues regarding GP and surgeon access, especially as a point of contact and an information source. However, these positions are also limited in supply and therefore over-worked. Care coordinators in rural and regional areas who were not specialised and therefore dealt with all cancer streams felt particularly pressured and time poor when attempting to identify and address their patients' needs.
".....having the time for those people just to sit down and talk, which as busy professionals, it's just getting harder and harder to devote the appropriate amount of time to individual patients that we would like and that they deserve. So things become very like - problem, fix it, move on." [Surgeon]
"...if there's no care coordinator or similar type person, those issues are either not resolved and that's bad or the patients seek alternate help themselves from their GP or other people." [Surgeon]
"Care coordinator X and I both have a number of different tumour groups that we are supposed to look after but I spend all my time looking after two...., I sort of pick up the worst ones but really, that's as much as I can do..." [Care coordinator]