This is the first study to comprehensively measure in patients with CKD in Australia the total out-of-pocket costs and the extent of hardship that are associated with the care of CKD. The prevalence of hardship reported in this study is lower than that found for other chronically ill patient populations in the same region . However, it lies well above the levels that tend to be seen in the Australian population  and is consistent with rates of hardship in other chronically ill populations internationally [10, 21]. In addition, the burden of out-of-pocket costs found in this study, a mean of AUD$907 in the previous three months is far greater than estimates found in other studies , reinforcing wider concerns about the extent to which the Australian health care system relies on individual contributions to fund health care. Individual spending on health care in Australia is high by international, high-income country standards. In a recent Commonwealth Fund survey of 11 high-income countries, the incidence of out-of-pocket costs exceeding US$1000 in the previous year among individual participants was 21% in Australia – behind only the United States (35%) and Switzerland (25%) . The current study makes an important contribution to the literature in this area by improving our understanding of the poorer economic circumstances of households affected by chronic illness and identifying the financial stressors that increase the likelihood of hardship in a CKD population.
We found high levels of out-of-pocket costs despite Australia having a comprehensive social health insurance system that is seen to be universal. Previous studies show out-of-pocket costs for treatment can pose serious barriers to adherence to recommended medical care [4, 10, 23, 24], especially for those who are socioeconomically disadvantaged. Patients with hardship were spending similar amounts out-of-pocket overall and in each medical and health related expense category across the stages of CKD. Patients with low means often prioritise paying for medical care over other important expenses . The impact of large out-of-pocket costs for patients with low financial resources can be severe. We found 13% of participants reported going without meals, 11% were unable to heat their homes, 12% increased the amount owing on their credit cards by greater than $AUD1000 and 19% missed medical appointments or failed to fill prescriptions because they were short of money. While not explored in this study, other research has shown that clinicians are often unaware that their patients’ are facing difficulty managing out-of-pocket costs . Patients can be reluctant to discuss cost pressures with their health care providers because of a perception that there are few viable solutions to the problem [10, 24, 25]. Clinicians could play a greater role in identifying patients at risk of hardship and linking them into existing social welfare support programs.
This study also raises an important implication for clinical practice. In contrast to the published literature on the quality of life of CKD patients , we found no differences in quality of life scores across the different stages of illness. However, patients with hardship had lower quality of life across the three stages of CKD and it was significantly lower for patients receiving dialysis care. These findings highlight the inter-relationship between chronic illness, economic wellbeing and quality of life. Maximising quality of life is an important treatment outcome to minimise morbidity and mortality rates in the management of CKD patients. However, maximising quality of life is also associated with other important economic outcomes such as maintaining employment and independence . The clinical management of CKD should take account of these broader outcomes which are relevant to the overall well-being of patients and their households.
This study has limitations. We achieved a participation rate of 63% and over-sampled patients receiving dialysis care in a community setting. This sample is also drawn from a predominantly low socioeconomic setting. However, comparison of the demographic and socioeconomic characteristics of our sample with the treated incident renal population in Australia and a national census of patients on dialysis shows that our sample is younger, less sick and has a higher proportion in patients still in paid employment (Additional file 1: Table S2). We have likely under-estimated the true economic impact of CKD for patients who are socioeconomically disadvantaged. In addition, the observed non-response is likely related to both outcomes and to hardship status, giving a potential for bias in association. We did not sample non-English speaking participants. The extent of hardship may be even more pronounced in these groups because of inherent reasons, including their ability to access and navigate existing social welfare supports. Finally, we measured hardship at one time point. It is likely that patients employ different coping strategies over time to improve their circumstances. A prospective design would allow assessment of the change in financial circumstances and understand better the direction of causation. In this study, the aim was instead to describe the lived experience of patients in which economic hardship, poor health and other aspects of social disadvantage co-exist. Given that our study population had been receiving dialysis for a mean of five years and were on average 12 years past their diagnosis, our results likely reflect the situation of the established ‘steady state’ for the households affected, demonstrating a need for early interventions to assist households to better cope with the negative economic sequelea of CKD.