"Who can I ring? Where can I go?" Living with advanced cancer whilst navigating the health system: a qualitative study.

BACKGROUND: People with advanced cancer often experience greater physical and psychosocial morbidity compared to those with early disease. Limited research has focused on their experiences within the Australian health system. The aim of this study was to explore the lived experiences of adults receiving care for advanced cancer. METHODS: A qualitative design with a descriptive phenomenological approach was used to explore the lived experiences of people with advanced cancer following their diagnosis. Twenty-three people living with an advanced solid malignancy receiving care were referred by their oncologists to take part in an interview conducted at their home, the hospital, or over the phone. RESULTS: Three key themes emerged relating to participants' experiences of living with advanced cancer: (1) living with a life-limiting diagnosis and uncertainty, (2) living with symptom burden and side effects, and (3) living within the health system, with two subthemes, the patient-clinician relationship, and care coordination. Participant relationships with their health professionals were particularly important and had a defining impact on whether patient experiences living with cancer were positive or negative. CONCLUSION: People with advanced cancer experienced broad variation in their experiences navigating the health system, and their relationships with clinicians and other health professionals were important factors affecting their perceptions of their experiences. Attention to the coordination of care for people with advanced cancer is necessary to improve their experiences and improve symptom control and the management of their psychosocial burden.

A cross-sectional analysis of out-of-pocket expenses for people living with a cancer in rural and outer metropolitan Western Australia.

Objective To determine the extent of medical and non-medical out-of-pocket expenses (OOPE) among regional/rural and outer metropolitan Western Australian patients diagnosed with cancer, and the factors associated with higher costs. Methods Cross-sectional data were collected from adult patients living in four regional/rural areas and two outer metropolitan regions in Western Australia who had been diagnosed with breast, prostate, colorectal or lung cancer. Consenting participants were mailed demographic and financial questionnaires, and requested to report all OOPE related to their cancer treatment. Results The median total OOPE reported by 308 regional/rural participants and 119 outer metropolitan participants were A$1518 (interquartile range (IQR): A$581-A$3769) and A$2855 (IQR: A$958-A$7142) respectively. Participants most likely to experience higher total OOPE were younger than 65 years of age, male, resided in the outer metropolitan area, worked prior to diagnosis, had private health insurance, were in a relationship, and underwent surgery. Multivariate analysis of regional/rural participants revealed that receiving care at a rural cancer centre was associated with significantly lower non-medical OOPE (estimated mean A$805, 95% confidence interval (CI): A$735-A$875, P=0.038; compared with other rural participants (A$1347, 95% CI: A$743-A$1951, P<0.001)). Conclusion The cancer patients who participated in this study experienced variation in OOPE, with outer metropolitan participants reporting higher OOPE compared with their regional/rural counterparts. There is a need for cost transparency and access to care close to home, so that patients can make informed choices about where to receive their care. What is known about the topic? In recent years, OOPE for health care in general and cancer in particular have been widely debated by consumers and not-for-profit organisations; the topic has attracted much political attention because it affects both equity and access to care and has wider financial implications for the community. Research studies and reports from both consumer organisations and a Ministerial Advisory Committee found that cancer patients can face exorbitant out-of-pocket costs, and that individuals with private health insurance and those with prostate and breast cancer reported higher costs. In Western Australia, a cancer centre providing comprehensive cancer care was established in the second most populous region to ameliorate the high costs for travel and accommodation that regional cancer patients are known to experience. What does this paper add? This study is unique because it collected detailed cost information from patients and reports on the OOPE of regional/rural and outer metropolitan Western Australian patients receiving care for one of the four most common cancers; it therefore offers novel insight into the experiences of these groups. This study demonstrates that outer metropolitan cancer patients are experiencing much higher OOPE compared with regional/rural cancer patients. Additionally, regional/rural study participants who accessed a Regional Cancer Centre experienced significantly lower non-medical OOPE, compared with regional/rural study participants receiving care elsewhere. What are the implications for practitioners? First, there is a need for improved communication of OOPE to minimise costs to the patient, for example, by facilitating access to local cancer care. Health service providers and insurance companies can improve cost transparency for cancer patients by making this information more readily available, allowing patients to make informed financial choices about where to seek care. Second, the needs of working patients deserve specific attention. These patients face significant work uncertainty and additional distress following a cancer diagnosis.

The role of psychosocial support in the experiences of people living with advanced cancer: A qualitative exploration of patients' perspectives.

BACKGROUND: People living with advanced cancer experience significant distress and reduced quality of life due to their symptom burden and life-limiting prognosis. Limited qualitative research has investigated their experiences accessing psychosocial supportive care, and how it meets their needs. AIM: To explore patients' perspectives of the role of psychosocial support in their experiences of living with advanced cancer. METHODS: This study used an exploratory qualitative research design and drew upon a social constructionist interpretive framework. Semi-structured interviews were conducted with 23 participants. Participants were asked about their experiences accessing and using psychosocial support following their diagnosis. Audio-recorded interviews were transcribed and analysed using deductive thematic analysis. RESULTS: The following six themes can be used to describe participants' experiences with psychosocial support: (1) accessing different types of support, (2) appreciating support, (3) need, (4) difficulties accessing support, (5) knowing about support and (6) asking for support. Sources of psychosocial support included family and friends, health professionals, and psychosocial supportive care services. Not all participants were able to access care that met their needs; barriers included suitability of available support, accessibility and stigma surrounding support use. CONCLUSION: Participants experienced broad variation in their awareness and access to psychosocial support services to meet their needs. Providers of psychosocial supportive care for advanced cancer patients need to consider service accessibility issues. Future psychosocial interventions targeting people living with advanced cancer should consider these issues during development and implementation.

'Biggest factors in having cancer were costs and no entitlement to compensation'-The determinants of out-of-pocket costs for cancer care through the lenses of rural and outer metropolitan Western Australians.

OBJECTIVE: The aim of this qualitative analysis was to determine patients' perceptions of the impact of cancer-related costs. DESIGN: A qualitative inductive content analysis of the comment sections of surveys completed by participants in a cross-sectional study of cancer-related expenses. SETTING: Residents of 4 regional/rural and 2 outer metropolitan areas in Western Australia. PARTICIPANTS: Adults diagnosed with breast, prostate, colorectal or lung cancer participated in the study between 1 April 2014 and 31 April 2017. MAIN OUTCOME MEASURES: This study identified the key factors contributing to the cost experiences reported by the participants. RESULTS: Participant comments were organised into 4 main categories perceived to incorporate the key factors contributing to the cost experiences reported by 300 participants: 1) health care system factors (access to care in the public or private sector, availability of services close to home, gap payments, cost of travel) 2) financial factors (impact of cancer on employment, ability to work, and career; and strategies for improving financial difficulties) 3) social and community support provided by the government and not-for-profit organisations and 4) understanding of the health care system. CONCLUSION: There is a need for cost transparency, initiatives for no- or low-fee billing providers, access to care close to home, development of financial assistance schemes and return to work programs to alleviate the financial hardship experienced by cancer patients and their families.

' If I don't have that sort of money again, what happens?': adapting a qualitative model to conceptualise the consequences of out-of-pocket expenses for cancer patients in mixed health systems.

Objective The aim of this study was to explore Western Australian cancer patients' experiences of out-of-pocket expenses (OOPE) during diagnosis and cancer treatment using a phenomenological approach. Methods Semi-structured interviews were conducted with a purposive convenience sample of 40 Western Australian cancer patients diagnosed with breast, lung, prostate or colorectal cancer. Participants were asked about the impact of their diagnosis, the associated costs and their experience within the health system. Data were analysed using thematic content analysis. Results Three key themes influencing participant OOPE experiences were identified: (1) personal circumstances; (2) communication with health providers; and (3) coping strategies. Despite Australia's public healthcare system, several participants found the costs affected their financial security and resorted to coping strategies including medication rationing and restrictive household budgeting. The key themes had a complex and interrelated effect on patient OOPE experiences and were used to adapt Carrera et al.'s model of economic consequences of cancer treatment on the patient and patient coping to describe these relationships in a mixed healthcare system. Conclusion Organised efforts must be implemented to mitigate maladaptive coping strategies being used by cancer patients: (1) health providers should seek informed financial consent from patients before commencing treatment; and (2) financial aid and support schemes for cancer patients should be reviewed to ensure they are delivered equitably. What is known on this topic? The financial cost of cancer can have significant adverse effects on cancer patients. Although financial transparency is desired by cancer patients, its implementation in practice is not clear. What does this paper add? This study adapts a conceptual model for the economic consequences of a cancer diagnosis and repurposes it for a mixed public-private health system, providing a framework for understanding downstream consequences of cancer costs and highlighting opportunities for intervention. What are the implications for health practitioners? Health practitioners need to initiate discussions concerning treatment costs earlier with cancer patients. There are several resources and guides available to assist and facilitate financial transparency. Without urgent attention to the financial consequences of cancer treatment and related expenses, we continue to leave patients at risk of resorting to maladaptive coping strategies, such as medication rationing and restrictive household budgeting.

Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset.

BACKGROUND: There are few quantitative studies on palliative care provision to Indigenous Australians, a population known to experience distinctive barriers to quality healthcare and to have poorer health outcomes than other Australians. OBJECTIVES: To investigate equity of specialist palliative care service provision through characterising and comparing Indigenous and non-Indigenous patients at entry to care. METHODS: Using data (01/01/2010-30/06/2015) from all services participating in the multi-jurisdictional Palliative Care Outcomes Collaboration, Indigenous and non-Indigenous patients entering palliative care were compared on proportions vis-à-vis those expected from national statutory datasets, demographic characteristics, and entry-to-care status across fourteen 'problem' domains (e.g., pain, functional impairment) after matching by age, sex, and specific diagnosis. RESULTS: Of 140,267 patients, 1,465 (1.0%, much lower than expected from statutory data) were Indigenous, 133,987 (95.5%) non-Indigenous, and 4,905 (3.5%) had a missing identifier. The proportion of patients with a missing identifier diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p<0.001), a higher proportion were female (51.5% versus 46.3%; p<0.001) or resided outside major cities (44.2% versus 21.5%, p<0.001). Across all domains, Indigenous compared with matched non-Indigenous patients had lower or equal risk of status requiring prompt intervention. CONCLUSIONS: Indigenous patients (especially those residing outside major cities) are substantially under-represented in care by services participating in the nationwide specialist palliative care Collaboration, likely reflecting widespread access barriers. However, the similarity of status indicators among Indigenous and non-Indigenous patients at entry to care suggests that Indigenous patients who are able to access these services do not disproportionately experience clinically important impediments to care initiation.

How communication between cancer patients and their specialists affect the quality and cost of cancer care.

PURPOSE: Communication in cancer care is multidimensional and may affect patient treatment decision-making and quality of life. This study examined cancer patients' perceptions of the communication with their cancer specialists and explored its impact on the care they received and the financial burden they experienced. METHODS: Semi-structured telephone interviews were conducted with 20 rural and 20 outer metropolitan Western Australians diagnosed with breast, lung, prostate or colorectal cancer. Thematic analysis using a phenomenological approach was undertaken to derive key themes regarding the communication experiences of the participants. RESULTS: Four main themes emerged: information context, communication about treatment options and treatment providers, communication about costs of treatment and impact of communication on continuity of care. The quality of the communication experienced by participants was variable and in many cases sub-optimal. This affected their ability to undertake well-informed decisions regarding treatment and providers and led to substantial out-of-pocket expenses for several participants. Whilst participants differed in their information needs and expectations, most participants trusted clinicians' treatment recommendations. CONCLUSIONS: Our results raise concerns about the quality of communication cancer patients receive during treatment and the repercussions for their treatment decisions and out-of-pocket expenses. Clear treatment and cost communication could empower patients in choosing treatment and providers. However, these findings suggest patients must remain vigilant during consultations and discuss available treatment pathways and their financial dimension to avoid costly treatments or missing out on available financial aid.

Out-of-pocket expenses experienced by rural Western Australians diagnosed with cancer.

PURPOSE: Out-of-pocket expenses (OOPE) can have a significant impact on patients' experiences of cancer treatment. This cross-sectional study sought to quantify the OOPEs experienced by rural cancer patients in Western Australia (WA), and determine factors that contributed to higher OOPE. METHODS: Four hundred people diagnosed with breast, lung, colorectal or prostate cancer who resided in selected rural regions of WA were recruited through the WA Cancer Registry and contacted at least 3 months after diagnosis to report the medical OOPE (such as surgery or chemotherapy, supportive care, medication and tests) and non-medical OOPE (such as travel costs, new clothing and utilities) they had experienced as a result of accessing and receiving treatment. Bootstrapped t tests identified demographic, financial and treatment-related factors to include in multivariate analysis, performed using log-linked generalised linear models with gamma distribution. RESULTS: After a median 21 weeks post-diagnosis, participants experienced an average OOPE of AU$2179 (bootstrapped 95% confidence interval $1873-$2518), and 45 (11%) spent more than 10% of their household income on these expenses. Participants likely to experience higher total OOPE were younger than 65 years (p = 0.008), resided outside the South West region (p = 0.007) and had private health insurance (PHI) (p < 0.001). CONCLUSIONS: Rural WA cancer patients experience significant OOPE following their diagnosis. The impact these expenses have on patient wellbeing and their treatment decisions need to be further explored.

Patient satisfaction with Radioguided Occult Lesion Localisation using iodine-125 seeds ('ROLLIS') versus conventional hookwire localisation.

BACKGROUND: Women with impalpable or poorly palpable breast cancer require radiologically guided localisation prior to breast conserving surgery. Radioguided Occult Lesion Localisation using Iodine-125 Seed (ROLLIS) is an emerging alternative to conventional Hookwire Localisation (HWL). We compared ROLLIS with conventional HWL with respect to patient reported stress and discomfort related to the localisation procedure. PATIENTS AND METHODS: From September 2013 to January 2016, women who were eligible for breast conserving surgery with impalpable or poorly palpable histologically confirmed invasive or in-situ carcinoma were recruited to the multi-centre ROLLIS randomised controlled trial and underwent either ROLLIS or HWL. Following surgery, a questionnaire was administered to each participant regarding the stress and discomfort related to the localisation procedure. Multivariate analysis was performed to compare the primary outcome of patient-reported stress and discomfort between localisation groups. RESULTS: 218 participants with 220 lesions were randomised and underwent breast conserving surgery following localisation. 201 (92.2%) and 202 (92.7%) of participants provided responses to the stress and discomfort components of the questionnaire respectively. HWL was associated with a statistically significant increased odds of greater stress and discomfort when compared to ROLLIS (OR = 2.07, p = 0.01 and OR = 1.94, p = 0.01 respectively). Insertion of multiple localisation devices was also associated with increased stress (OR = 5.68, p < 0.01) and discomfort (OR = 2.96, p < 0.01). CONCLUSION: When compared with conventional HWL, ROLLIS is associated with significantly less stress and discomfort for patients prior to breast conserving surgery.