Introduction

Patient-centred health care recognises the importance of patients’ engagement in their care and the value of this engagement for patient outcomes and quality of care [1]. Cancer patients have unique needs, and clear patient-centred communication is essential for good clinical practice in cancer [2, 3]. Poor communication in cancer care is multidimensional and exerts a negative influence on treatment decisions, symptom management, psychosocial experience and quality of life, with further ramifications for patient out-of-pocket expenses (OOPE) [4, 5]. Research suggests that health professionals need to discuss the financial consequences of diagnostic and treatment choices in the same way that they disclose treatment side effects [6], because financial distress caused by cancer treatment has been identified as a mortality risk factor [7, 8].

In Australia, with increasing cancer incidence and prevalence [9] and escalating costs for health care [10], the burden of cost is shifting to the patient [10]. Patients are reporting increasing financial burden from cancer care and associated direct and indirect OOPE [11,12,13,14]. Limited work has explored the relationship between communication and patient’s experiences of cost and OOPE [15]. Research suggests that conversations about treatment costs in clinician–patient interactions are rare and clinicians are often hesitant to initiate the conversation [16,17,18], whilst patients want to have the conversation [16, 19]. Cost discussions promote shared treatment decision-making and may lower OOPE, improve patient satisfaction and could facilitate more informed treatment decisions [15]. Clear cost communication has been endorsed in reports released by patient advocacy bodies, voicing the concerns of cancer patients [11, 20].

This study explored rural and outer metropolitan cancer patients’ perceptions of the communication with their cancer specialists, its impact on the quality of the care they received and the financial burden they have experienced.

Methods

Setting

WA’s health system

Western Australia (WA) is Australia’s largest state, spanning 2.5 million square kilometres. It has a population of just under 2.6 million [21], of which 80% reside in the Perth metropolitan area. The health system is a mix of services provided by the Federal and State Governments and private health care providers. Whilst tertiary hospitals in WA are located in the capital city, Perth, some densely populated outer metropolitan suburbs and large regional towns have hospitals with specialised cancer units. All Australians have universal access to primary care, and the right to receive public hospital services, for free either as a public patient or as a private patient with extra costs. People with private health insurance (57.1% of the Australian population [22]) have varying levels of cover for access to private hospitals and ancillary health services.

Cancer patients’ treatment pathways

Prior to diagnosis most symptomatic cancer patients present to a GP or a hospital emergency department. Access to a cancer specialist requires a referral usually initiated by a GP or a hospital clinician who has performed initial diagnostic tests. An individualised treatment plan is then developed, usually by a multidisciplinary team, and the treatment options are discussed with the patient.

We conducted a larger multimethod study that explored Western Australian cancer patients’ experiences during diagnosis and cancer treatment, which focused on patients’ experiences of their health care and associated OOPE. The current study is a secondary analysis of these data. Whilst not explicitly targeted in interviews, the emergence of strong themes surrounding communication with service providers prompted this secondary analysis.

Participant recruitment

Participants were recruited from the patient sample who took part in the Out-of-Pocket Expenses Study (OOPES), an ambi-directional cohort study investigating rural and outer metropolitan cancer patients’ OOPE as described elsewhere [23]. Eligible participants were recruited via the WA Cancer Registry and offered to opt-in to being contacted for a telephone interview regarding their OOPE experiences following completion of treatment. A purposive convenience sample of 40 respondents (20 participants from each of the OOPES primary regions of interest—outer metropolitan and rural) was selected to participate in semi-structured, in-depth interviews. This sample has been recommended as a size for phenomenological studies at which thematic saturation should be achieved [24, 25]. Eligible participants were selected based on region, diagnosis, age, health insurance status, employment status and a range of experiences (as reported in the questionnaires) (Table 1), with participant selection prioritising under-sampled characteristics as the interviews progressed.

Table 1 Participant demographic characteristics
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Ethics

Ethics approval was obtained from the WA Country Health Service Ethics Committee (#2014:10) and the Department of Health WA Human Research Ethics Committee (#2014/26).

Data collection

Semi-structured telephone interviews were conducted in 2016 and 2017 and audio recorded. They explored the patient experience throughout their diagnosis and treatment, with particular attention to the impact of costs following their cancer diagnosis and treatment. Interviews were on average 37 min long and guided by an interview schedule. Once all interviews were completed, they were transcribed verbatim by a third party (RS).

Data analysis

We adopted a phenomenological approach, as we did not want to constrain the analysis with preconceptions and potentially overlook important aspects of participants’ experiences [26]. Transcripts were read initially by project personnel (NSA, HH, JN). Preliminary line-by-line coding of each transcript was undertaken using the constant comparison method and NVivo, version 12, to identify and manage the codes. Thematic content analysis consisted of rereading the transcripts, identifying units of meaning, grouping those units into clusters and identifying a theme that expresses the essence of each cluster [27]. The codes were exported from NVivo into a Word document and NSA repeatedly read the transcripts to identify and consolidate the codes relating to communication into overarching themes and identify patterns between participants to connect main themes. JN reviewed the identified themes and their representative quotes to confirm their credibility. Any discrepancies were discussed and resolved. This cross-comparative approach facilitated the confirmation and validation of conclusions.

Results

Sample characteristics

Forty interviews were undertaken with 20 rural and 20 outer metropolitan participants diagnosed with breast (n = 11), prostate (n = 11), colorectal (n = 11) and lung (n = 7) cancer (Table 1).

Four themes were identified regarding participants’ communication experiences: information context, communication about treatment options and treatment providers, communication about costs of treatment and impact of communication on continuity of care. There were no notable differences between the themes that arose for outer metropolitan and rural participants; however, rural participants noted difficulty with transition of care between tertiary and rural health care providers.

Information context

The information context surrounding a cancer diagnosis encompasses the delivery, time, place and health professional providing the patient with information relating to their diagnosis and prognosis, as well as the quality and the quantity of the information provided the format, the clinical setting and the time allowed for the consultation. Disclosure of a cancer diagnosis was viewed as a norm by cancer patients; however, one rural participant reported that their doctor was reluctant to inform them of their diagnosis (Table 2, Q2.1).

Table 2 Sample quotes about patient experiences of communication content related to their diagnosis and treatment
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Broadly, participants revealed that they were provided with plenty of oral and written information about their disease, treatment options and available support. Some found the information packages informative, explained in a way they could understand and a good reference resource (Table 2, Q2.2–Q2.6); others were overwhelmed by the information provided (Table 2, Q2.7–2.11). The need for a support person to be present at the appointments to assist with processing all the information provided was emphasised (Table 2, Q2.8). The complexity and intricacy of the information were a particularly strong sub-theme for participants who talked about the scary and unfamiliar terminology that they needed to “Google” or ask about, which some patients found to be “too much to handle” (Table 2, Q2.7, Q2.9, Q2.10). A participant treated in both the public and the private sector found the private sector more comprehensive when it came to delivery of information (Table 2, Q2.12).

Communication about treatment options and treatment providers

All participants were involved in making decisions about their treatment, and there were varying levels of trust placed in the recommendations of health professionals, friends and family or personal research. Many trusted the professional knowledge and personal recommendations of the referring clinician to help them choose a specialist and type of treatment (Table 3, Q3.1–Q3.3). However, several participants relied on friends or relatives for advice with treatment choices (Table 3, Q3.4) or on their own research into treatment options available locally, nationally and internationally. In some instances, this meant going against their specialists’ initial treatment recommendations (Table 3, Q3.5).

Table 3 Sample quotes of patient experiences of communication about treatment options
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It was very important for participants to be well-informed about their treatment and the possible side effects.

They reported conflicting sentiments regarding the clinicians’ treatment planning and rationale. Whilst some were pleased with the care they received, others felt that they had not been well-informed about their treatment, its aim or rationale (Table 3, Q3.7–Q3.9). Lack of clarity about the importance of the timing of treatments was raised as an issue (Table 3, Q3.10).

Participants were concerned about communication practices regarding treatment options and side effects of treatments (Table 3, Q3.11–Q3.14). Some identified a reluctance by their specialist to discuss side effects and attributed this to the health providers’ lack of awareness about the importance of this information for the patient, unwillingness to acknowledge that some treatments can cause harm (Table 3, Q3.11–Q3.13) and lack of personal experience with the treatment (Table 3, Q3.14).

The importance of self-advocacy to ensure that patient needs were clearly expressed was acknowledged (Table 3, Q3.15–Q3.18). In some instances, this meant that participants needed to undertake extensive reading and be prepared for the consultation (Table 3, Q3.16). In other instances, it was a question of common sense and intuition to negotiate and navigate optimal care (Table 3, Q3.17–Q3.18).

Other sub-themes that arose included the importance of communication about available treatment providers, differences between treatment in the public and the private sector, the impact of private health insurance and availability of local services. Being offered a choice of treatment providers, including at a local level, and being in control of their treatment pathway was valued by participants (Table 3, Q3.19–Q3.21).

Participants with private health insurance expressed disappointment with providers who did not make the option of receiving care as public patients known to them (Table 3, Q3.22). Furthermore, the notion of fair access to free health services was discussed together with the lack of information regarding the available public and private treatment pathways and their associated costs (Table 3, Q3.23).

Communication about cost of treatment

Patients valued discussions about treatment options, providers and the associated costs, because such discussions increased participants’ control over their decision-making and financial situation (Table 4, Q4.1–Q4.3). The role of health professionals to help their patients navigate the health care system in the most cost-efficient manner was acknowledged. Having a doctor cognisant of the extent of patients’ treatment expenses, financial circumstances and attitude towards OOPE proved beneficial for some participants (Table 4, Q4.4). Being involved in the decision making process empowered patients to be in control of their finances whilst ensuring that they receive the best treatment (Table 4, Q4.3).

Table 4 Sample quotes of patient experiences of communication about cost of treatment
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Conversely, several participants treated in the private sector acknowledged that cost of treatment had never been discussed and expressed disappointment with the lack of price transparency and cost-related discussions. Unexpected post-treatment bills were seen as an unnecessary surprise that could have been avoided if treatment costs had been discussed prior to receiving treatment (Table 4, Q4.5, Q4.6). The need for transparency regarding the costs of health and/or support services after discharge from the hospital, medications, gap payments and financial support available was evident (Table 4). The lack of awareness of services and costs prevented participants from accessing financial assistance (Table 4, Q4.7), lead to treatment non-adherence (Table 4, Q4.10) and caused unnecessary stress to patients and their families (Table 4, Q4.8, Q4.11).

Communication and continuity of care

Participants were aware of the role that health professionals at all levels of care had in their cancer journey (Table 5, Q5.3–Q5.8). Many credited their care providers for the smooth transitions between health providers within and between the public and the private sector, as well as between tertiary and secondary and rural services (Table 5, Q5.1, Q5.2).

Table 5 Sample quotes of patient experiences of communication and continuity of care
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The importance of local and hospital based cancer nurses in helping patients to navigate the health system was widely recognised. Nurses were considered a primary point of contact for health related issues and a reliable source of information when needed, whose emotional support was greatly appreciated (Table 5, Q5.15–Q5.20).

Navigation through the different interfaces of the health system proved challenging for some, particularly rural participants. Issues identified include lack of timely communication between health professionals involved in the patient’s care and gaps in communication between cancer specialists themselves, between specialists and patients and between specialist and rural health providers (Table 5, Q5.9–Q5.12). Participants acknowledged that their continuity of care and information needs had been impaired by the lack of connection and clear communication between specialist and primary care providers (Table 5, Q5.12, Q5.24–Q5.25). Additionally, some participants perceived limited continuity of care in the public sector (Table 5, Q5.13, Q5.14) that was attributed to the change in staff and system organisation (i.e. the appointment being with the consultant but being seen by a registrar).

Another sub-theme was patient dissatisfaction with the decreasing level of support as they transitioned from active treatment to survivorship or other types of care. Once the patient’s condition was under control, the number of appointments reduced and the connection with cancer specialists weakened. Participants felt abandoned and left to navigate their ongoing health issues in a health care system they perceived as complex and costly (Table 5, Q5.21–Q5.23).

Discussion

Clinician–patient communication emerged as a prominent issue in interviews that explored patient experiences of the cost of a cancer diagnosis. Participants’ communication experiences were variable and in many cases did not meet their needs. Communication problems, described by some participants, affected their ability to undertake well-informed and unbiased decisions regarding treatment and providers—a fundamental right for cancer patients outlined in existing guidelines [1, 2, 28, 29]—and resulted in substantial OOPE.

In response to the growing body of recommendations for clear clinician–patient communication in the literature and from consumer organisations, clinician communication guidelines and training programs have been developed [30, 31] to support clinicians’ communication skills and improve cancer patient experiences [32, 33]. In Australia, both Medical and Surgical Oncology trainees have mandatory communication training; however, how this is implemented in clinical practice remains unclear. Despite these measures, our findings indicate that clinicians continue to avoid cost discussions and suggest that current communication practices and clinical guidelines have little impact on patient experiences and associated costs [34, 35].

We found that participants differed in their information needs and expectations, and most participants trusted clinicians’ treatment recommendations. This is consistent with previous research [36]; however, a minority faced medical paternalism and expressed a sense of disappointment in their treating clinicians’ refusal to respect their treatment preferences (Table 3). Sub-optimal communication has a detrimental impact on the quality of the decisions patients are able to make in relation to their treatment, and can increase the use of alternative and/or unnecessary treatments, lead to psychosocial distress, decrease patient satisfaction and may exert significant cost burden upon the patient [4].

Whilst all participants were involved in the decision making process, their level of involvement varied. Participants who were not informed about different treatment options and their possible side effects did not feel empowered to navigate their care. The lack of price transparency affected a number of participants. This disconnect observed in some clinician–patient interactions calls for clinicians to ensure they are sufficiently engaging patients in their care, understand their expectations and respect their needs [37, 38].

Optimal cancer care pathways (OCPs) have been endorsed in Australia and are being implemented nationally [39]. Although they promote quality cancer care and aim to ensure that all people diagnosed with cancer receive the best care, regardless of where they live or receive treatment, their implementation requires collaboration and communication between health professionals at all levels and with their patients. OCPs do not incorporate details about communication regarding options for care providers, quality and cost of care and patient experiences. These shortfalls could be addressed through systematic collection of standardised outcome metrics [40] and measuring outcomes that are important to patients, including cost experiences to empower patients to make informed decisions based on provider health outcomes [41]. Consequently, the need for optimal communication between doctors and patients and between health professionals regarding treatment options, providers, outcomes and costs becomes increasingly important [42]. In Australia, leading cancer organisations have developed a Standard for Informed Financial Consent, which encourages greater commitment and transparency from doctors and health care providers to inform patients of the costs. This includes providing full financial disclosure and an accurate fee estimate with updates to help patients navigate the financial implications of their diagnosis [43].

Informative and well-timed clinician–patient communication conducted at an appropriate level would empower patients in choosing treatment and providers, help health professionals to objectively assess patient’s needs, assist with the decision-making process and ensure smooth transitions of care across the care continuum. Our findings indicate that to facilitate the delivery of coordinated cancer care and to ensure prompt referral to specialist, allied health and supportive care services, health professionals should routinely undertake comprehensive assessment and screening of cancer patients for clinical, psychosocial and supportive care needs.

Finally, several participants in our study acknowledged the role of nurses in their care. The cancer nurse coordinator (CNC) service has been available in rural and metropolitan WA since 2006 and encompasses a broad range of psychosocial support and assistance with the coordination of care [44]. The role that CNCs play in patient care could be further explored, as greater accessibility could benefit patients who experience sub-optimal care coordination when transitioning between services and after the completion of active treatment.

This study has a number of messages to all health providers who care for patients with cancer. Building on a number of recommendations from the Breast Cancer Network Australia in their State of the Nation report [20], which are applicable to other cancers, we recommend that health providers ensure that:

  1. 1.

    The level of engagement in treatment decision making is ascertained at each step of the patients’ journey.

  2. 2.

    Rural patients are provided with information about diagnostic and treatment services available locally.

  3. 3.

    Patients are well informed and given choice between public and private treatment providers.

  4. 4.

    There is cost transparency for tests, procedures and treatments.

  5. 5.

    Patients are fully informed of the treatment cost prior to treatment commencement.

  6. 6.

    All patients have access to a cancer nurse.

  7. 7.

    There is timely communication between all health providers involved in the patient’s care and continuum of care.

Strengths and limitations

Our findings and conclusions should be considered within the limitations of the overall study. Although we utilised a purposive sampling strategy to ensure that a diverse range of participants were represented in the data, lung cancer patients are underrepresented in the sample as they became progressively ill and many had passed away by the time of the interview. Due to the existing relationship between the interviewers and participants from previous follow-up in the OOPES study, social desirability bias may have emerged; however, this was deemed to be outweighed by the benefit of the rapport participants had with the interviewers. A particular strength of the study is that it reports on the experiences of rural and outer metropolitan cancer patients with four different cancer types and, thus, offers novel insight into the experience of these under-researched groups. However, we identified that there were no specific differences in the experience of these participant groups other than those reported regarding transitions of care.

Conclusion

Whilst a system-wide approach is needed to improve communication and transparency in cancer care, an open dialogue that incorporates patient values and personal circumstance with particular attention to financial standing should guide treatment discussions. Health care providers should regularly assess how the patient is travelling through the disease continuum and assist with referrals and coordination of care. This must be coupled with initiatives to successfully monitor and sustain improvements in patient communication and care; to ensure that patients’ information needs are met, the care they have received is of high quality and at an affordable cost.