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.

' 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.

Systematic review and meta-analysis of patient reported outcomes for nurse-led models of survivorship care for adult cancer patients.

PURPOSE: This systematic review aimed to determine the effectiveness of nurse-led cancer survivorship care, compared with existing models of care, on patient reported outcomes for cancer survivors. METHODS: Randomised and non-randomised controlled trials and controlled before-after studies published in English between 1 January 2007 and 28 July 2017 were identified in bibliographic databases including Medline, Pubmed and PsychINFO. Included studies described nurse-led cancer care after treatment to adults (age ≥18 years) <2 years post treatment completion. Risk of bias was assessed using Joanna Briggs Institute's tools and meta-analysis was undertaken. RESULTS: Twenty one publications were included describing 15 tumour-specific trials involving 3278 survivors of breast (n = 5), gynecological (n = 3), head and neck (n = 2), colorectal (n = 2), upper gastrointestinal (n = 2) and prostate (n = 1) cancers. Seven trials reported quality of life (QoL) using the EORTC QLQ-C30; participants receiving nurse-led care (4-6 months) had better cognitive (4 trials, 463 participants; mean difference [MD] = 4.04 [95% CI, 0.59-7.50]; p = 0.02) and social functioning (4 trials, 463 participants; MD = 3.06 [0.14-5.97]; p = 0.04) but worse appetite loss (3 trials, 354 participants; MD = 4.43 [0.08-8.78]; p = 0.05). After intervention completion, intervention participants had reduced fatigue (4 trials, 647 participants; MD = -4.45 [-7.93 to -0.97]; p = 0.01). CONCLUSION: This systematic review synthesised outcomes of models of nurse-led survivorship care and contributes a meta-analysis of patient QoL to survivorship evidence. This review was limited by the risk of bias in many included studies for blinding of treatment personnel and outcome assessors. Nurse-led care appears beneficial for cancer survivors for some QoL domains.

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.

Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care.

PURPOSE: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. METHODS: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. RESULTS: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. CONCLUSION: Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience-providing the vital "link" that people described as missing from their survivorship care.

A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma.

PURPOSE: To explore the post-treatment experiences and preferences for follow-up support of lymphoma survivors. METHODS: Two focus groups were conducted with 17 participants to explore informational, psychological, emotional, social, practical and physical needs, 6-30 months post-treatment for lymphoma. Perceptions regarding a potential model of survivorship care were also elicited. RESULTS: Thematic content analysis revealed five key themes: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred post-treatment care. Participants described a sense of loss as they transitioned away from regular interaction with the hospital at the end of treatment, but also talked about the need to find a "new normal". Establishing post-treatment support structures that can provide individualised information, support, reassurance and referrals to community and peer support were identified as a helpful way to navigate the transition from patient to post-treatment survivor. CONCLUSIONS: Participants in our study articulated a need for a flexible approach to survivorship care, providing opportunities for individuals to access different types of support at different times post-treatment. Specialist post-treatment nurse care coordinators working across acute and community settings may offer one effective model of post-treatment support for survivors of haematological malignancies.

Improving regional and rural cancer services in Western Australia.

OBJECTIVE: This paper examines health reform which has been designed to improve cancer services across Western Australia. SETTING: Western Australia is a large state divided into nine regions each with differing demographics. The diversity of the state and the distribution of the population over a large area of land create significant challenge in ensuring equality in service delivery. DESIGN: A comparison was conducted looking at cancer services in Western Australia pre-2005 and service delivery in 2014. A review of the partnership initiatives and programs provides a clear discussion on the need for coordination of care between service providers. MAIN OUTCOME: The approach undertaken in Western Australia has seen an increase in the delivery of cancer services closer to the patient's home as well as greater involvement of primary care professionals in cancer care. This work has resulted in demonstrated improvements in patient care and support. CONCLUSION: Services for cancer patients need to be accessible closer to home with distance being an appreciable barrier to treatment access.A statewide approach needs to be developed to ensure all people have equitable access to service delivery.

Developing a sustainable model of rural cancer care: the Western Australian Cancer Network project.

PROBLEM: Cancer-related mortality is higher in rural areas than in urban centres. One of the contributing factors is limited access to treatment options in rural areas. DESIGN: An evaluation of the effectiveness of the Western Australian Cancer Network (CanNET WA) pilot project was undertaken using qualitative methods and document analysis. SETTING: CanNET WA was established in the Great Southern region of Western Australia. KEY MEASURES FOR IMPROVEMENT: Three measures were assessed: impact of the CanNET WA on consumers, care providers and changes to systems and processes. STRATEGIES FOR CHANGE: CanNET WA comprised a number of initiatives that together led to an improvement in cancer care. These included a multidisciplinary cancer team, improved access to visiting medical specialists, formal links with tertiary cancer centres, increased primary health involvement in cancer care and increased education regarding cancer care for local health care providers. EFFECTS OF CHANGE: Changes in the three key outcome measures were reported. Consumers had greater choice of treatment options and had more involvement in decision making. Health professionals reported improvements in care coordination and in peer support related to the new multidisciplinary cancer care team, and improved links with tertiary cancer centres in Perth. Systemic changes included mapping of referral pathways and tumour-specific care pathways. LESSONS LEARNT: CanNET WA has demonstrated the need for coordinated cancer care for rural people that offers care locally whenever possible. The success of the project paved the way for the rollout of the CanNET WA concept into other regional areas of Western Australia.