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

Scholes‐Robertson, Nicole; Gutman, Talia; Howell, Martin; Craig, Jonathan C.; Chalmers, Rachel M.; Tong, Allison

doi:10.1016/j.ekir.2021.11.010

Cited by 19 publications

(28 citation statements)

References 43 publications

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“…Transport to health services is a major barrier for rural patients with CKD and was the largest contributor to out‐of‐pocket costs in this study 16,26 . Rural patients have fewer transport options, reduced incentre dialysis services and greater distances to access home dialysis training and transplantation services than their metropolitan counterparts 16,26,50 .…”

Section: Discussionmentioning

confidence: 90%

“…Patients with financial hardship experienced greater out‐of‐pocket costs, with a greater proportion being classed as catastrophic spending than those without hardship. This combined with our previous qualitative work regarding patient perspectives on access, which included ‘compounding economic consequences’ and ‘unrelenting financial strain’, provide us with the subjective components of financial toxicity being experienced by rural people with CKD 16 …”

Section: Discussionmentioning

confidence: 99%

“…In this paper we quantify the financial hardship and presence of catastrophic health expenditure (out‐of‐pocket expenditure greater than 10% of household income) associated with accessing dialysis and kidney transplantation. In a previous paper discussing rural patients' perspectives on access to kidney replacement therapy we discuss the subjective components of financial toxicity including ‘compounding economic consequences’ and ‘unrelenting financial strain’ faced by rural patients 16 …”

Section: Introductionmentioning

confidence: 99%

“…People with chronic illnesses face higher household out‐of‐pocket healthcare expenditures, 31 however, the financial toxicity experienced by patients with CKD living in a rural setting in a high income country with universal public health insurance scheme such as Australia is largely unknown. Rural patients with CKD have reported profound economic consequences, depletion of income/leave and difficulty coping with unexpected expenses in accessing kidney replacement therapy 16 . The aims of this study were to assess the financial toxicity experienced by people with CKD who reside in rural settings in Australia.…”

Section: Introductionmentioning

confidence: 99%

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Financial toxicity experienced by rural Australian families with chronic kidney disease

et al. 2023

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Aim: Chronic kidney disease (CKD) and its treatment places a financial burden on healthcare systems and households worldwide, yet little is known of its financial impact, on those who reside in rural settings. We aimed to quantify the financial impacts and out-of-pocket expenditure experienced by adult rural patients with CKD in Australia.Methods: A web based structured survey was completed between November 2020 and January 2021. English speaking participants over 18 years of age, diagnosed with CKD stages 3-5, those receiving dialysis or with a kidney transplant, who lived in a rural location in Australia.Results: In total 77 (69% completion rate) participated. The mean out of pocket expenses were 5056 AUD annually (excluding private health insurance costs), 78% of households experienced financial hardship with 54% classified as experiencing financial catastrophe (out-of-pocket expenditure greater than 10% of household income).Mean distances to access health services for all rural and remote classifications was greater than 50 kilometres for specialist nephrology services and greater than 300 kilometres for transplanting centres. Relocation for a period greater than 3 months to access care was experienced by 24% of participants. Conclusion:Rural households experience considerable financial hardship due to outof-pocket costs in accessing treatment for CKD and other health-related care, raising concerns about equity in Australia, a high-income country with universal healthcare.access, chronic kidney disease, financial toxicity, out-of-pocket costs, quality of life Summary at a glanceAustralian rural patients requiring dialysis or kidney transplantation experience outof-pocket costs that place high levels of stress on their families. Despite living in a Country with universal health insurance, expenses experienced by patients and their

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Section: Discussionmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Financial toxicity experienced by rural Australian families with chronic kidney disease

et al. 2023

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“…Also, some interviews that were sought were unable to occur due to commencement of COVID-19, with most interviews from that point needing to be done via videoconferencing or the telephone due to travel restrictions. Some of the issues raised may also be experienced by those in urban settings, however, patients in rural areas have additional distances to travel (tyranny of distance) and have more out of pocket expenses (pervasive financial distress) because of the need to pay for travel and accommodation that are not typically needed for patients in urban areas 40 41…”

Section: Discussionmentioning

confidence: 99%

Clinicians’ perspectives on equity of access to dialysis and kidney transplantation for rural people in Australia: a semistructured interview study

et al. 2022

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ObjectivesPeople with chronic kidney disease requiring dialysis or kidney transplantation in rural areas have worse outcomes, including an increased risk of hospitalisation and mortality and encounter many barriers to accessing kidney replacement therapy. We aim to describe clinicians’ perspectives of equity of access to dialysis and kidney transplantation in rural areas.DesignQualitative study with semistructured interviews.Setting and participantsTwenty eight nephrologists, nurses and social workers from 19 centres across seven states in Australia.ResultsWe identified five themes: the tyranny of distance (with subthemes of overwhelming burden of travel, minimising relocation distress, limited transportation options and concerns for patient safety on the roads); supporting navigation of health systems (reliance on local champions, variability of health literacy, providing flexible models of care and frustrated by gatekeepers); disrupted care (without continuity of care, scarcity of specialist services and fluctuating capacity for dialysis); pervasive financial distress (crippling out of pocket expenditure and widespread socioeconomic disadvantage) and understanding local variability (lacking availability of safe and sustainable resources for dialysis, sensitivity to local needs and dependence on social support).ConclusionsClinicians identified geographical barriers, dislocation from homes and financial hardship to be major challenges for patients in accessing kidney replacement therapy. Strategies such as telehealth, outreach services, increased service provision and patient navigators were suggested to improve access.

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Experience of Chronic Kidney Disease and Perceptions of Transplantation by Sex

Adoli,

Campeon,

Chatelet

et al. 2024

JAMA Netw Open

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ImportanceThe pathway to kidney transplantation (KT) begins with the patient’s acceptance of this surgical procedure after discussion with the nephrologist. The patients’ perceptions of the disease and of KT may influence their willingness to undergo transplantation.ObjectiveTo describe patients’ experiences of kidney disease and their perceptions of KT and the nephrologists’ perceptions of the patient experience.Design, Setting, and ParticipantsThis qualitative study collected data through semistructured interviews with patients with chronic kidney disease and nephrologists in the Bretagne, Île-de-France and Normandie regions, France. Researchers involved in the study in each region purposely selected 99 patients with chronic kidney disease who initiated dialysis in 2021, based on their age, sex, dialysis facility ownership, and also 45 nephrologists, based on their sex and years of experience. Data analysis was performed from January to October 2023.Main Outcomes and MeasuresThemes were identified using inductive thematic analysis. Specific characteristics of men and women as well as the nephrologist’s views for each theme were described.ResultsThis study included 42 men and 57 women (56 [57%] aged 60 years or older) who started dialysis in 2021 and 45 nephrologists (23 women and 22 men). Six major themes were identified: (1) burden of chronic kidney disease on patients and their families, (2) health care professional–patient relationship and other factors that modulate chronic kidney disease acceptance, (3) dialysis perceived as a restrictive treatment, (4) patients’ representation of the kidney graft, (5) role of past experiences in KT perception, and (6) dualistic perception of KT. In some cases, women and nephrologists indicated that women’s perceptions and experiences were different than men’s; for example, the disease’s psychological impact and the living donor KT refusal were mainly reported by 8 women.Conclusions and RelevancePatients’ past experience of chronic kidney disease in general and of KT in particular, as well as their relationship with their family and nephrologist, were substantial determinants of KT perception in this qualitative study. Targeted policies on these different factors might help to improve access to KT, and more research is needed to understand whether there are sex-based disparities.

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

Cited by 19 publications

References 43 publications

Financial toxicity experienced by rural Australian families with chronic kidney disease

Financial toxicity experienced by rural Australian families with chronic kidney disease

Clinicians’ perspectives on equity of access to dialysis and kidney transplantation for rural people in Australia: a semistructured interview study

Experience of Chronic Kidney Disease and Perceptions of Transplantation by Sex

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