'…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

Abstract

ObjectiveThe 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. MethodsSemi-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. ResultsThree 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. ConclusionOrganised 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.

‘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

“…The response rate for the survey was lower than expected; however, the sample size was large enough to ascertain difference between participants, and 70% of participants commented on issues pertaining to costs. Factors identified by participants who provided open comments reflect the views of those who participated in the in-depth interviews 25 and not only confirmed our previous findings but also provided a better insight into the issue from multiple perspectives. A further limitation is that lung cancer patients were underrepresented.…”

Patients’ Perspectives on Access to Dialysis and Kidney Transplantation in Rural Communities in Australia

“…For rural patients this is magnified with substantial additional costs than those faced by urban patients, particularly for transportation, accommodation and relocation if required, and further compounded by excessive leave requirements, to attend appointments and surgeries 19,40,41 . There is a scarcity of information available as to the extent of rural financial hardship in people with CKD, and this requires further research, especially to assess the impact the financial hardship exerts on decision making and access to all forms of treatment 42 .…”

“… 18 , 39 , 40 There is a scarcity of information available as to the extent of rural financial hardship in people with CKD, and this requires further research, especially to evaluate the impact the financial hardship exerts on decision-making and access to all forms of treatment. 41 …”

The impacts of unmet supportive care needs of cancer survivors in Australia: A qualitative systematic review

“…Regret about decision to have surgery (Hardcastle et al, 2018;Parker et al, 2014) Forced self-management strategies (Hardcastle et al, 2018;Kwok et al, 2015) Upset and disturbance (Player et al, 2014;Rowlands et al, 2015) Shock (Bolton & Isaacs, 2018) Feelings of unpreparedness and isolation (Chambers et al, 2018) Anxiety and uncertainty (Kwok & White, 2014) Forced to learn by 'hard knocks' (Moore et al, 2014) Exacerbation of side effect (Philp et al, 2017) Disappointment (Kwok et al, 2015) Lack of information about available services Prevented psychosocial service use (Gunn et al, 2013;Pascal et al, 2015) Intensified feelings of isolation (Pascal et al, 2015) Reliance on family members for language translation (Levesque, Gerges, Wu, & Girgis, 2020) Treatment nonadherence and stress (Slavova-Azmanova et al, 2019) Feelings of angst and frustration (McGrath et al, 2012) Lack of information about potential financial impact Unexpected financial burden (Moore et al, 2014;Newton et al, 2020) Vulnerable to making substantial financial decisions they may have later regretted (McGrath, 2017) Physical…”

“…Negative impact on life (Philp et al, 2017;Rowlands et al, 2015) Financial burden, reduced confidence, reluctance to socialise (Bolton & Isaacs, 2018) Feelings of incapability at work, need for assistance to complete tasks, disconnection from family life (Player et al, 2014) Struggle with daily domestic activities (Brown et al, 2015) Challenges when socialising (Parker et al, 2014) Compromised work role upon return to work (Anderson et al, 2011) Fear of cancer recurrence and psychological distress Feelings of vulnerability, loneliness and abandonment (Pascal et al, 2015) Practical Financial and employment issues Financial burden (McGrath, 2017;McGrath et al, 2012;Parker et al, 2014) Need for government benefits (McGrath, 2017;Parker et al, 2014) Added stress (McGrath, 2016(McGrath, , 2017 Prevented psychosocial support (Gunn et al, 2013;Thomas et al, 2013) Inconvenience (Chambers et al, 2018) Treatment nonadherence (Newton et al, 2020) Loss of confidence and competence (McGrath et al, 2012) Difficulties accessing services Prevented asking for help (O'Callaghan et al, 2016) Added stress (Schiena et al, 2019) Feelings of isolation and worsened mental health (Gunn et al, 2013) Feelings of guilt and unworthiness (Parker et al, 2014) Emotional Lack of understanding and holistic care Feelings of being unsupported, mistrust and disempowerment (Williams et al, 2020) Feelings of distress and dissatisfaction, negative psychological impact (Thomas et al, 2013) Psychological Lack of psychological support Negative impacts on QoL (Moore et al, 2014) Feelings of fear, isolation and abandonment (Pascal et al, 2015) Social None reported None reported…”