Difficult conversations: Australian Indigenous patients' views on kidney transplantation.

BACKGROUND: Indigenous Australians suffer a disproportionate burden of end stage kidney disease (ESKD) but are significantly less likely to receive a transplant. This study explores Indigenous ESKD patients' views on transplantation as a treatment option. METHODS: The Improving Access to Kidney Transplants (IMPAKT) research program investigated barriers to kidney transplantation for Indigenous Australians. An interview study, conducted in 2005-2006, elicited illness experience narratives from 146 Indigenous patients, including views on transplant. Interviews were conducted at 26 sites that collectively treat the majority of Indigenous ESKD patients. Key themes were identified via team consensus meetings, providing a flexible framework and focus for continued coding. RESULTS: Four inter-related themes were identified in patient commentary: a very high level (90% of respondents) of positive interest in transplantation; patients experienced a range of communication difficulties and felt uninformed about transplant; family involvement in decision-making was constrained by inadequate information; and patients needed to negotiate cultural and social sensitivities around transplantation. CONCLUSIONS: Indigenous ESKD patients demonstrated an intense interest in transplantation preferring deceased over living kidney donation. Patients believe transplant is the path most likely to support the re-establishment of their 'normal' family life. Patients described themselves as poorly informed; most had only a rudimentary knowledge of the notion of transplant but no understanding of eligibility criteria, the transplant procedure and associated risks. Patients experienced multiple communication barriers that - taken together - undermine their engagement in treatment decision-making. Families and communities are disempowered because they also lack information to reach a shared understanding of transplantation. Cultural sensitivities associated with transplantation were described but these did not appear to constrain patients in making choices about their own health. Transplant units and local treatment providers should collaborate to develop user-friendly, culturally informed and region-specific patient education programs. Quality improvement cycles should underpin the development of national guidelines for patient education. Noting Indigenous patients' intense interest in transplantation, and nephrologists' concerns regarding poor transplant outcomes, research should prioritise exploring the predictors of transplant outcomes for Indigenous Australians.

If you can't comply with dialysis, how do you expect me to trust you with transplantation? Australian nephrologists' views on indigenous Australians' 'non-compliance' and their suitability for kidney transplantation.

INTRODUCTION: Indigenous Australians suffer markedly higher rates of end-stage kidney disease (ESKD) but are less likely than their non-Indigenous counterparts to receive a transplant. This difference is not fully explained by measurable clinical differences. Previous work suggests that Indigenous Australian patients may be regarded by treating specialists as 'non-compliers', which may negatively impact on referral for a transplant. However, this decision-making is not well understood. The objectives of this study were to investigate: whether Indigenous patients are commonly characterised as 'non-compliers'; how estimations of patient compliance factor into Australian nephrologists' decision-making about transplant referral; and whether this may pose a particular barrier for Indigenous patients accessing transplants. METHODS: Nineteen nephrologists, from eight renal units treating the majority of Indigenous Australian renal patients, were interviewed in 2005-06 as part of a larger study. Thematic analysis was undertaken to investigate how compliance factors in specialists' decision-making, and its implications for Indigenous patients' likelihood of obtaining transplants. RESULTS: Specialists commonly identified Indigenous patients as both non-compliers and high-risk transplant candidates. Definition and assessment of 'compliance' was neither formal nor systematic. There was uncertainty about the value of compliance status in predicting post-transplant outcomes and the issue of organ scarcity permeated participants' responses. Overall, there was marked variation in how specialists weighed perceptions of compliance and risk in their decision-making. CONCLUSION: Reliance on notions of patient 'compliance' in decision-making for transplant referral is likely to result in continuing disadvantage for Indigenous Australian ESKD patients. In the absence of robust evidence on predictors of post-transplant outcomes, referral decision-making processes require attention and debate.

"Looking back to my family": indigenous Australian patients' experience of hemodialysis.

BACKGROUND: In common with Indigenous populations elsewhere, Indigenous Australians have higher incidence of end-stage kidney disease (ESKD), but lower transplantation rates than their non-Indigenous counterparts. Understanding how the demands of dialysis impact on, and are impacted by, the lives of Indigenous patients may provide important insight into treatment pathways and decision-making. METHODS: We conducted semi-structured interviews in 2005-06 with 146 Indigenous and 95 non-Indigenous patients from nine hospital renal wards and 17 associated dialysis centres, which together treat the majority of Indigenous Australian ESKD patients. RESULTS: Factors influencing treatment experience included: the impacts of late diagnosis; family separations associated with relocating for treatment; the physical and psychosocial demands of hemodialysis; and ineffective communication between health care providers and patients. Although not unique to them, Indigenous patients were more likely to experience the combined effect of all factors. CONCLUSIONS: Social/situational circumstances profoundly affect Indigenous Australian dialysis patients' ability to fully engage with treatment. This may ultimately affect their likelihood of receiving optimal treatment, including transplantation. Areas for improvement include: earlier diagnosis; improved linkages between specialist renal services and primary care in regional settings; more effective communication and patient education; and more systematic, transparent approaches to patient "compliance" in transplant and home dialysis guidelines.

Patient views about treatment of stage 5 CKD: a qualitative analysis of semistructured interviews.

BACKGROUND: How patients choose between alternative treatments for kidney failure is poorly understood. Recent studies of chronic kidney disease report that clinical outcomes, such as life expectancy, are rarely reflected in a patient's decision for type of treatment compared with nonclinical outcomes, such as time on dialysis therapy, convenience, or impact on the family. METHODS: A qualitative analysis using thematic synthesis of patient views about renal replacement therapy (RRT) was undertaken. As part of a national study of patients and renal health care providers, we interviewed 95 Australian dialysis and transplant patients to explore how they perceive these alternative treatments. RESULTS: 52 patients were on satellite hemodialysis therapy, 8 patients were on incenter hemodialysis therapy, 8 patients were on continuous ambulatory peritoneal dialysis therapy, 5 patients were on automated peritoneal dialysis therapy, 4 patients were on home hemodialysis therapy, and 18 patients had a functioning transplant at the time of interview. Freedom, convenience, self-care, effectiveness, and simplicity were commonly cited positive characteristics, whereas confinement, risk, family burden, pain, and time commitment were negative characteristics associated with RRTs. Characteristics were not specific to dialysis modalities, and some (eg, self-care) were seen as both positive and negative. A limitation of the study was that only 17 of 77 (22%) dialysis patients interviewed were on a home-based therapy. CONCLUSIONS: Patients preferred RRTs that enhanced their freedom and autonomy and were convenient, effective, and simple. Treatments that minimized confinement and risk also were viewed positively. Our analysis suggests that patients might choose between therapies based on their perception regarding which therapy most embodies particular characteristics that minimize impact on their lifestyle. Presentation of information regarding RRTs should focus on these characteristics and the potential impact of alternative treatments on the patients and how they wish to lead their lives.

They really want to go back home, they hate it here: the importance of place in Canadian health professionals' views on the barriers facing Aboriginal patients accessing kidney transplants.

Aboriginal Canadian patients with end-stage kidney disease receive disproportionately fewer transplants than non-Aboriginal patients. The reasons for this are poorly understood and likely to be complex. This qualitative study employed thematic analysis of in-depth interviews with Canadian kidney health professionals (n=23) from programs across Canada to explore their perspective on this disparity. Individual-level factors were the most commonly reported barriers to Aboriginal patients accessing transplants-most notable of which was patients' remote living location. Understanding the role of 'place' as a barrier to accessing care and the lived experiences of Aboriginal patients emerged as key research priorities.

Study Protocol--Improving Access to Kidney Transplants (IMPAKT): a detailed account of a qualitative study investigating barriers to transplant for Australian Indigenous people with end-stage kidney disease.

BACKGROUND: Indigenous Australians are slightly more than 2% of the total Australian population however, in recent years they have comprised between 6 and 10% of new patients beginning treatment for end-stage kidney disease (ESKD). Although transplant is considered the optimal form of treatment for many ESKD patients there is a pronounced disparity between the rates at which Indigenous ESKD patients receive transplants compared with their non-Indigenous counterparts. The IMPAKT (Improving Access to Kidney Transplants) Interview study investigated reasons for this disparity through a large scale, in-depth interview study involving patients, nephrologists and key decision-making staff at selected Australian transplant and dialysis sites. METHODS: The design and conduct of the study reflected the multi-disciplinary membership of the core IMPAKT team. Promoting a participatory ethos, IMPAKT established partnerships with a network of hospital transplant units and hospital dialysis treatment centres that provide treatment to the vast majority of Indigenous patients across Australia. Under their auspices, the IMPAKT team conducted in-depth interviews in 26 treatment/service centres located in metropolitan, regional and remote Australia. Peer interviewing supported the engagement of Indigenous patients (146), and nephrologists (19). In total IMPAKT spoke with Indigenous and non-Indigenous patients (241), key renal nursing and other (non-specialist) staff (95) and a small number of relevant others (28). Data analysis was supported by QSR software. At each site, IMPAKT also documented educational programs and resources, mapped an hypothetical 'patient journey' to transplant through the local system and observed patient care and treatment routines. DISCUSSION: The national scope, inter-disciplinary approach and use of qualitative methods in an investigation of a significant health inequality affecting Indigenous people is, we believe, an Australian first. An exceptionally large cohort of Indigenous participants provided evaluative comment on their health services in relation to dialysis and transplant. Additionally, the data includes extensive parallel commentary from a cohort of specialists, nurses and other staff. The study considers a 'patient journey' to transplant within a diverse range of Australian treatment centre/workplace settings. The IMPAKT Interview study protocol may contribute to improvements in multi-disciplinary, flexible design health services research with hard to reach or vulnerable populations in Australia and elsewhere.

The use of psychosocial criteria in Australian patient selection guidelines for kidney transplantation.

Psychosocial criteria are increasingly being included in practice guidelines for determining patient suitability for kidney transplantation. Although intended to promote evidence-based decision-making, if poorly defined, the inclusion of psychosocial criteria has the potential to reduce transparency in patient selection and equity of access. We reviewed all Australian practice guidelines concerning patient suitability for kidney transplantation and qualitatively analysed their inclusion of, and approach towards, psychosocial criteria. Transplant Directors from all Australian adult transplant units were invited to submit their unit's guidelines for this national research audit. All 16 units (100%) submitted some form of documentation. We analysed only those documents that were purposely structured tools for directing patient selection (eight guidelines used in 10 transplant units). Content analysis was performed on the abstracted psychosocial criteria. Psychosocial criteria--particularly non-compliance and smoking--were commonly included. In general, the psychosocial criteria were ill-defined and lacking in substantiating evidence and recommendations for assessment or action. Our results reveal that current Australian patient selection guidelines for kidney transplantation incorporate poorly defined psychosocial criteria that vary greatly. Furthermore, there appears to be a weak evidence base underpinning their inclusion. The use of psychosocial criteria in this manner decreases the transparency of patient selection and increases the potential for subjective estimates of social worth to influence patient selection. The priority given to such criteria in transplant guidelines requires attention and debate.

"All they said was my kidneys were dead": Indigenous Australian patients' understanding of their chronic kidney disease.

OBJECTIVES: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients' engagement with their treatment. DESIGN, SETTING AND PARTICIPANTS: Qualitative study conducted in 2005-2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. RESULTS: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations. CONCLUSIONS: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.

Decision-making about suitability for kidney transplantation: Results of a national survey of Australian nephrologists.

AIM: This study aimed to elucidate the factors affecting nephrologists' decision-making on patients' suitability for kidney transplantation. Given the reduced access to transplantation for Indigenous Australians, the role of patient's ethnicity was of particular interest. METHODS: A postal survey of practising nephrologists and trainees was undertaken in Australia. Each participant was provided with a unique set of 15 hypothetical patient descriptions, with demographic, clinical and behavioural factors randomly generated to ensure an overall balance of factors across the cases. The main outcome measure was whether kidney transplantation was recommended. RESULTS: Responding nephrologists and trainees were more likely to recommend transplantation for hypothetical patients who were young, of normal weight and described as compliant. They were less likely to recommend transplantation for smokers, or for people with diabetes or heart disease. No significant differences related to the patients' sex or ethnicity. The geographical location of the respondent was a significant determinant, with differences according to their State/Territory and their metropolitan/non-metropolitan location. CONCLUSION: When all other factors were held constant, nephrologists and trainees appear to base their decision-making regarding suitability for transplant on clinical and behavioural factors, rather than on the basis of ethnicity or sex. In practice, however, clinical and behavioural factors cluster with ethnicity, and this is likely to contribute to the current poor access to transplantation for Indigenous end-stage kidney disease patients. Apparent differences in decision-making according to the respondent's location may reflect variations in practice across the country.

Australian nephrologists' attitudes towards living kidney donation.

BACKGROUND: The demand for deceased donor kidneys far outweighs the supply. The rate of living kidney donation (LKD) has been steadily increasing world-wide and is associated with excellent outcomes for the recipient. With respect to donors' outcomes, however, a strong evidence base is lacking. This study explores the attitudes and perceptions of Australian nephrologists towards LKD, specifically regarding donor risk, their willingness to recommend LKD and their own preparedness to become a live donor. METHODS: A postal survey of Australian nephrologists was conducted. Responses to six multiple choice questions about LKD were collected as a separate focus of a larger study. RESULTS: We achieved a survey response rate of 52.4% and analysed responses from 184 practicing nephrologists and trainees. Australian nephrologists and trainees were generally supportive of LKD. The vast majority (95%) of respondents indicated that they would recommend it to a suitable donor or would themselves (97%) donate a kidney to an immediate family member. However, fewer than half (43%) would recommend LKD to a potential donor, where their relative's end-stage kidney disease (ESKD) had been attributed to diabetes and where there was a strong family history of diabetes. A minority thought that LKD increased the donor's risk of mortality (12%) or of ESKD (25%). Few nephrologists (4%) indicated their preparedness to be an altruistic donor--to a recipient unknown to them. CONCLUSIONS: Although LKD is clearly supported by the nephrologists, the increasing incidence of ESKD attributable to diabetes, now the leading cause of ESKD in Australia, might, however, progressively limit its use. Meeting the growing demand for kidney transplantation will require an increased supply of both live and deceased donor kidneys. We should develop, evaluate and implement best-practice approaches to achieve this.

Barriers to access by Indigenous Australians to kidney transplantation: the IMPAKT study.

Although Indigenous Australians represent less than 2% of the national population, they account for 8-10% of new patients commencing treatment for end-stage renal disease (ESRD). Almost half come from remote regions lacking renal disease treatment services. In those regions, their incidence of ESRD is up to 30 times the incidence for all Australians. Kidney transplantation is the optimal treatment for ESRD. Compared with long-term dialysis, it results in better quality of life, longer life expectancy and lower costs of health care. Indigenous Australians with ESRD receive transplants at approximately one-third the rate of non-Indigenous patients. There are similar disparities in access to kidney transplants for Native Americans, Aboriginal Canadians and New Zealander Maori. The reasons for such disparities have not been studied in any detail. IMPAKT (Improving Patient Access to Kidney Transplantation) is an NHMRC-funded study, involving eight major renal units. It aims to identify the reasons for Indigenous Australians' poor access to transplantation. It will systematically examine each of the steps a new dialysis patient must negotiate in order to receive a transplant. Each of these steps can become a barrier.