The role of general practice to address the supportive care needs of Australian cancer survivors: a qualitative study

The identification of supportive care needs appeared to be a non-standardised process across practices, although common approaches to identifying needs were noted. Most participants described that they identify the supportive care needs of their patients through informal discussion, for example:

… first, I just ask them, you know, how they’re coping, how they’re feeling … (GP6)

I think I always go in with, let me check how you’re doing and then we’ll talk about the physical aspects of your cancer care. (PN7)

The follow-up questions GPs and PNs would ask to understand supportive care needs varied depending on their practice, professional background, and experience with cancer survivors. One GP acknowledged how a ‘… GPs’ personal experience with cancer, their medical experience with cancer, their current awareness of the field’ (GP6) influenced their consideration of supportive care needs. A lack of standardisation in addressing supportive care needs was highlighted – ‘… there is a bit of lack of guidance and lack of standardisation’ (GP6). Further illustrating this lack of standardisation, some PNs had a very proactive approach to identifying supportive care needs:

Today I just knocked on the door of the doctor and asked if I could visit and come into the consult and just ask … what are you doing about food? What are you drinking? … just assessing in my mind, is he getting enough calories and fluids and things like that. Do we need to intervene? (PN6)

In contrast, another PN felt that the dynamic of the practice they worked in hindered their ability to identify supportive care needs:

… we don’t get that communication [from within the practice], basically unless they [patients] tell us … it would just be nice to be armed, to be ready to say … I’m very sorry I didn’t know this was happening, is your husband, ok? And how are your children feeling? You know, just sort of to be, yeah, more involved basically. (PN2)

Some had their own approaches to identify supportive care needs such as:

… a set of electronic questions to ask patients. Some questions are generic and then some are tailored to the specific disease. For cancer we ask about mental health, diet and nutrition, exercise, pain, and mobility. (PN8)

Others were more dependent on patients identifying and reporting issues:

Sometimes I probably identify it, if they haven’t, like if they’re not coming in to ask anything in particular, there may be something that, you know, I’ve suggested and put in place. (PN1)

I probably wouldn’t say we identify them. I would say that the patient identifies them, and we make ourselves available … (PN4)

Correspondence from tertiary care can also be used to identify supportive care needs. However, most participants did not routinely receive correspondence from tertiary care about patients’ supportive care needs. Any correspondence received from hospitals appeared to be mostly clinically related, as outlined by two GPs:

… the hospitals very much tend to focus on the clinical side of things, not the peripheral support needs. (GP1)

The average discharge summary probably won’t have that kind of information. It may have reference to the fact that they’re being seen. That they’re going to have community physio or something. But it won’t necessarily identify that, you know, this individual’s specific supportive care needs. (GP5)

Even appropriate clinical correspondence from tertiary care was believed to be difficult to obtain ‘let alone any supportive care [correspondence]’ (PN5).

In contrast, one GP felt they did receive adequate supportive care needs correspondence from tertiary care:

So, the discharge letters are quite comprehensive and also, I receive from the nurses about what they have already done and what is expected from me, so this is acceptable, and this is good communication. (GP2)

Several participants believed there is a place to identify and screen supportive care needs in tertiary care. One PN (who is also a cancer survivor) described the lack of consideration of supportive care needs in tertiary care with her anecdote as a patient:

I think supportive care is pretty much left up to whoever is looking after them in the community … They were absolutely brilliant at what they do [cancer service] but there was no discussion about any other supportive needs which somebody may have wanted. (PN5)

Screening for supportive care needs in tertiary care appeared to be welcomed by GPs, ‘…it would be good if it was maybe screened for in hospital and then just a brief flagging summary to us …’ (GP5) as a potential facilitator for alleviating GP workload and improving management of supportive care needs in primary care, ‘I think it needs to be done in the hospital … so, you know, we’re not fooling around in a GP surgery trying to sort things out last minute’ (GP1).

In contrast, one GP considered that with clear role definitions there is capacity for supportive care needs to be both identified and managed in general practice:

… if GPs are made aware that this is one of their roles in cancer management, cancer survivorship, then they don’t really need or expect to have something from the tertiary centre … I don’t think a lot of GPs are clear on what is actually happening in the tertiary centre, sometimes they might assume that it’s all been attended to … (GP6)

Participants discussed the time-consuming nature of addressing supportive care as a barrier to its appropriate provision within time-constrained general practice consultations:

These types of consultations take quite a lot of time, you end up running very late in your wait room, which creates quite an issue. (GP6)

This was particularly pertinent for the psychological needs of cancer survivors:

Dealing with psychological distress takes a lot of time, you can’t just, you know, write a prescription for them then rush them out the door, you’ve got to take time to let that person sit there and tell you what’s happening … (GP4)

Several GP participants highlighted that they generally do not have adequate time to properly address patients’ supportive care needs in one consultation, for example: ‘No, no you never have enough time …’ (GP1). Although participants acknowledged that longer appointments can be arranged, often this can be logistically challenging:

… the average consultation length is between ten and fifteen minutes and yes you can make a double appointment … but often that is not possible because things happen quickly and at short notice, it’s not always possible to plan these things. (GP1)

GPs acknowledged that inadequate consultation time could be a particularly significant barrier to the provision of supportive care within bulk billing practices:

… where there’s a lot of socio-economic need and everyone’s being bulk billed then there’s about five or six minutes for each consultation and it would be very challenging, I think, to be able to then find the time for each person in that scenario … (GP4)

… if you’re sort of one of those bulk billing centres and you only really have those single appointments then you’re absolutely not going to be able to touch on these things appropriately, there’s no way. (GP6)

The time-consuming nature of addressing supportive care needs was felt to be compounded by the Medicare (Australian Universal Health Coverage Scheme) funding mechanisms, with participants identifying systemic problems impacting their ability to spend the necessary time addressing supportive care needs:

I guess it’s the constant thing with general practice … you always feel like you’re rushing to some extent and that’s sort of part of the way the system is set up unfortunately. (GP5)

It was clear from GP responses that the long appointments required for addressing supportive care needs are not practically or adequately supported in the Medicare system:

… the set up with the MBS [Medicare Benefits Schedule] item numbers isn’t great for long appointments … even if they book them long, they end up being over 40 minutes … and the time slot has been half an hour and you’re there at 50 minutes and you have to end the consultation but you’re still only able to charge that 44 in the MBS thing … I do it all the time but some doctors might not be as willing and it does have a ramification on you, as an individual. (GP6)

Furthermore, one participant expressed how inadequate Medicare funding also impacts PNs:

… some surgeries, if every appointment isn’t fully booked with a patient that they can bill, they’re losing money … that comes down also to funding of general practice, you know, there’s no [MBS] item numbers now for PNs … in general practice, you can’t bill anything unless a doctor has seen the patient. (PN5)

Despite the barriers associated with MBS items for PNs, several PNs discussed how they often have adequate time to address supportive care needs, particularly compared to their GP colleagues:

I probably feel as though more so than not, I do have adequate time … I think when they’re sometimes in with the doctor … they could feel like they’re rushed … (PN1)

I think that we as nurses, we have more time to be able to explore that a little bit more and how their diagnosis is affecting not only them but their family. (PN7)

The need to better utilise PNs was a view held by several participants, ‘… it’s like practices really don’t allow their nurses to be used fully and some of the stuff we do it’s like non-tangible stuff …’ (PN5). Similarly, one GP felt that the designated role that PNs are assigned for doing General Practice Management Plans is an improper use of their nursing expertise:

… we have nurses employed simply to do care plans and make sure the paperwork is absolutely correct which is a ludicrous situation. Nurses should be doing nursing things, not administrative paperwork. (GP1)

The community liaison worker role, funded by one practice, provides an opportunity to support PNs in this role, particularly as PNs perceived that the General Practice Management Plan consultations were valuable for addressing supportive care needs:

… so, a care plan [General Practice Management Plan] is a perfect time to be able to talk through, just go through everything that is affecting that patient so discussing every aspect of their health … (PN7)

GPs and PNs identified challenges in the provision of supportive care for cancer survivors from vulnerable populations, including cancer survivors with an intellectual disability, mental health conditions, or childhood and older cancer survivors. For example:

… we’ve got a patient who has been a long term mental health patient … he has had an extension of a primary tumour that he had many years ago … lives in poor housing, low-socio-economic, low intellect … so trying to advocate for him and make sure that he’s got all the supports in place that’s necessary for his wellbeing as much as we’re able to. (PN6)

… they might need to be able to get to the toilet, or have a commode, or be fed or have some form of nutrition … as an out of hours doctor you were called in on the weekends with cancer patients and their elderly relatives that were looking after them, wife or husband, couldn’t manage them anymore because of these needs. (GP1)

Participants also recognised challenges with managing the needs of cancer survivors from culturally and linguistically diverse (CALD) backgrounds. One GP considered professional translation services useful; ‘We have a translator, and we organise family meetings. That’s the way we try to solve the problem and it actually works very well’ (GP7). Another GP (GP2) noted how consultation time constraints and low health literacy are additional barriers to managing supportive care needs of cancer survivors from this group.

GPs and PNs identified additional challenges faced by cancer survivors living in non-metropolitan regions due to accessing support services. Lack of transportation to metropolitan health services was regarded as a significant barrier for individuals in these regions, ‘… some of these people, imagine if they were single or on their own, how would they get to town, so they need to organise that’ (PN6). The lack of available services in non-metropolitan regions was recognised as a barrier to the provision of supportive care:

I’ve got a couple of patients at the moment and the women are like in their forties ... really unwell with their cancer and there’s just hardly any services for them and particularly up in the hills, and you’ll find this the more rural you go … if they’re not well enough to drive, you know, to the suburbs, then your options really, really decrease up here. (PN5)

This was exceptionally difficult for older cancer survivors, even in areas close to metropolitan areas:

Often, it’s not just the medical side of things, so it’s the transport, getting them to their treatments … a lot of them, particularly live up in the hills, they don’t like driving down to town anymore … so getting them to treatments can be difficult. (PN5)

Participants working in non-metropolitan regions would endeavour to refer cancer survivors to local services to avoid lengthy travel, if possible:

… for someone that’s not feeling well, and you know is going through that, doesn’t want to be doing extra trips to town, so we do stick to our local area even if that is minimal resources available. (PN4)

Both GPs and PNs expressed a desire for more information and education on managing supportive care needs once identified. GPs described their capacity to manage physical side effects of cancer treatment with appropriate information from specialists:

I think very clear advice from oncologists about how to manage physical symptoms and when to, I guess you know, be alarmed … so I’m talking about side effects from treatments. (GP4)

While GPs felt less confident in managing certain physical needs of cancer survivors without appropriate guidance, PNs expressed uncertainties on how to manage the more holistic needs of patients:

… like even a lady … she asked me, ‘how much do I tell my children?’, ‘what should I tell my children?’ And I’m like, well I feel like someone that may have more experience with this is better to explain that to you … we have quite good relationships with the people that we’re dealing with, but we don’t have the skills or the knowledge. (PN4)

The community liaison worker highlighted the importance of addressing social needs to appropriately manage supportive care needs and the ability of her role to ‘identify and support relevant services for social care needs’, representing a key aspect of SCN management.

PNs expressed a desire for professional development relating to supportive care needs of cancer survivors. One PN expressed the need for ‘upskilling and educating more nurses and doctors to look at the bigger picture of their patients’ (PN5). Education appeared to be a commonly held need which could address ambiguity relating to the various needs of cancer survivors:

… offering ongoing professional development opportunities for people … it has to be an ongoing thing that highlights or brings to the forefront of people’s minds what cancer patients’ needs are. (PN6)

PNs identified barriers in the provision of supportive care relating to a lack of access to information about patients’ cancer care from other healthcare providers. Patient care information was seen as a facilitator for improving SCN management, and there was a desire for a more comprehensive understanding of the available supports for patients, both within and outside of health care:

Documentation, so that’s the other thing in general practice, you have no idea who or who else is involved in your patients’ care unless you actually sit down with them and say, ‘what other specialists are you seeing?’, ‘what other allied health professionals?’, you know, like, ‘do you go to church or belong to any clubs and things?’ … Like, there’s nowhere where that information is sort of written in one place … (PN5)

The community liaison worker addressed patient need for social support services to enable the doctor to ‘get a holistic picture of the patient’. This was facilitated through good communication within the practice and between the patient and the community liaison worker where the community liaison worker provides ‘an additional channel between the doctor and the patient’. The community liaison worker also highlighted the benefits of centralised access to patient records beyond tertiary information, ‘ACAT [Aged Care Assessment Team] assessment reports are not routinely sent to GPs, despite this information being incredibly useful’. The community liaison worker had the time to enable access to these documents to make this information available to the patients’ primary care team.

One PN described how she did not have access to patient information from within her own practice and how she is often unaware of a cancer diagnosis:

I don’t think as practice nurses, we don’t get that information come through to us, so until they sit and talk to us and tell us what’s going on, we don’t actually know … because all the documents go through to the GP … so, I may not realise until they actually come in and … I am giving them their treatment or … for a flu injection or care plan, that this is actually going on in their life … (PN2)

In addition to a lack of knowledge about patients’ cancer care, participants highlighted lack of awareness of available support services for referrals. PNs also expressed a lack of awareness of how to access services, ‘… to be honest I wouldn’t really know how to access it … palliative care, help at home, showering, medications …’ (PN2). A sense of helplessness was felt concerning an inability to provide appropriate supports:

It is difficult for me, like if they say to me that they ‘need this’ or ‘I’m struggling with this’, how I get that information, how I can support them … it’s really hard and I struggle with ways in which I can support them other than being there. (PN4)

GPs felt that information on available services had to be actively sought, ‘if there are services that are available from hospitals it would be great to receive information on that…instead of us needing to kind of find out for them’ (GP4), or learnt from personal experience outside of professional practice:

I didn’t know about some of these exercise programs that were available … if it wasn’t for the fact that my [spouse] has been through the sort of cancer journey and that was how I learnt about that, and I’ve been practicing as a GP for fifteen years. (GP3)

Participants identified that having a list of available services is a facilitator for supportive care:

As a GP you need to be aware of a range of services available, and this is an issue … there used to be printed copies of available services which were good, but these get outdated too quickly now. (GP9)

This was considered a potentially valuable resource for both health care professionals (HCPs) and patients.

The community liaison worker additionally discussed the change in social service provision to predominantly online as a barrier to managing social supportive care needs:

There was a service at … [location] …that housed all social services. So, you could send people there confident that they would get the help they needed. [It] had all the services like NDIS [National Disability Insurance Scheme] in the one place, now they are all online which makes it hard for some people. (CLW)