Jeannie Devitt

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 patients 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.

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

SUMMARY:  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.

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

BackgroundIndigenous 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.MethodsThe 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.DiscussionThe 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.

“Looking back to my family”: Indigenous Australian patients’ experience of hemodialysis

BackgroundIn 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.MethodsWe 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.ResultsFactors 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.ConclusionsSocial/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.

Difficult conversations: Australian Indigenous patients’ views on kidney transplantation

BackgroundIndigenous 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.MethodsThe 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.ResultsFour 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.ConclusionsIndigenous 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.