End-stage kidney disease patient evaluation of the Australian 'My Kidneys, My Choice' decision aid.

BACKGROUND: A multidisciplinary team in Australia and New Zealand utilized a current decision-making theory to develop the 'My Kidneys, My Choice' decision aid (MKDA) to support end-stage kidney disease (ESKD) treatment options in decision-making. Assessment of the MKDA was deemed critical to practice integration. METHODS: A multisite pre-test, post-test study design was used. Routine ESKD education was supported by the MKDA. Knowledge levels, worries and priorities were assessed pre- and post-education with Likert-scale questions. MKDA usability and treatment option preferences were surveyed post-test. Data were analysed in SPSS. RESULTS: Ninety-seven participants completed the pre-survey and 72 (70%) the post-survey. Mean pre-test knowledge scores ranged from: 0.88 (SD 1.5) for conservative care to 1.32 (SD 1.3) for centre-based dialysis. Post-decision-making knowledge levels increased significantly (P < 0.001). Worry and flexibility scores all increased significantly (P < 0.05) from pre- to post-test; about future pre- 4.15 (SD 1.3), post- 4.61 (SD 0.76); change to lifestyle 4.23 (SD 1.05), 4.59 (SD 0.8); ability to work/do leisure activities 3.67 (SD 1.56) 4.27 (SD 1.17) and desire for flexibility 4.51 (SD 0.86), 4.76 (SD 0.66). MKDA usability scores were high: easy to understand 4.64, (SD 0.77), easy to follow 4.65, (SD 0.66) and supporting decision-making 4.76 (SD 0.61). MKDA section scores ranged from 4.21 (SD 0.75) for writing treatment choices to 4.90 (SD 0.41) for the use of the treatment option comparison grid. CONCLUSIONS: Preliminary MKDA assessment revealed high patient acceptance and usability. Patients had equitable knowledge of all treatment options but experienced higher post-worries levels than anticipated.

'My kidneys, my choice, decision aid': supporting shared decision making.

BACKGROUND: For patients with chronic kidney disease (CKD) who are progressing to end-stage kidney disease (ESKD) a decision of whether to undertake dialysis or conservative care is a critical component of the patient journey. Shared decision making for complex decisions such as this could be enhanced by a decision aid, a practice which is well utilised in other disciplines but limited for nephrology. METHODS: A multidisciplinary team in Australia and New Zealand (ANZ) utilised current decision-making theory and best practice to develop the 'My Kidneys, My Choice', a decision aid for the treatment of kidney disease. RESULTS: A patient-centred, five-sectioned tool is now complete and freely available to all ANZ units to support the ESKD education and shared decision-making process. Distribution and education have occurred across ANZ and evaluation of the decision aid in practice is in the first phase. CONCLUSIONS: Development of a new tool such as an ESKD decision aid requires vision, multidisciplinary input and ongoing implementation resources. This tool is being integrated into ANZ, ESKD education practice and is promoting the philosophy of shared decision making.

Renal unit characteristics and patient education practices that predict a high prevalence of home-based dialysis in Australia.

AIM: The proportion of patients using home dialysis in Australia varies from 6% to 62% between renal units. The aim of this study was to determine if the variance is attributed to any underlying renal unit factors including pre-end stage education practices. METHODS: An online survey was distributed to all Australian units that offered home dialysis. Logistic regression was performed to estimate the effects of renal unit characteristics on the binary outcome of <30% versus ≥ 30% of patients using home dialysis, and for ≥ 10% of patients using home haemodialysis (HHD) dialysis specifically. Prevalent home dialysis rates were sourced from the Australia and New Zealand Dialysis and Transplant Association registry. RESULTS: 33 of 43 units (77%) completed the survey. Factors shown to predict ≥ 30% of patients using home dialysis were; a metropolitan based renal unit compared with a rural or remote unit (OR 1.08, 95% CI 1.01-1.15), a New South Wales unit compared with other states (OR 1.13, 95% CI 1.04-1.22), and a unit that offered multiple group education sessions per year (OR 1.01, 95% CI 1.01-1.02). A unit that offered >1 h of pre-end stage education per patient, compared with ≤ 1 h predicted more than 10% of patients on HHD (OR 2.84, 95% CI 1.17-6.90). CONCLUSION: Our data suggest certain pre-end stage education practices are significantly associated with home dialysis rates above the national average. The consistent above average home dialysis rates witnessed in New South Wales appear to be the result of renal unit culture, education strategies and policies that support 'home dialysis first'.

Increasing home dialysis knowledge through a web-based e-learning program.

AIM: There has been a global decline in the uptake of home-based dialysis therapies in the past 20 years. The ability to provide appropriate information to potential patients in this area may be confounded by a lack of knowledge of home dialysis options. The aim of this study was to develop a web-based education package for health professionals to increase knowledge and positive perceptions of home-based dialysis options. METHODS: A three-module e-learning package concerning home dialysis was developed under the auspices of the home dialysis first project. These modules were tested on 88 undergraduate health professionals. Changes in attitudes and knowledge of home dialysis were measured using custom designed surveys administered electronically to students who completed the modules. Matched pre and post responses to the survey items were compared using Wilcoxon signed rank tests. RESULTS: The pre survey indicated clear deficits in existing knowledge of home dialysis options. In particular, when asked if haemodialysis could be performed at home, 22% of participants responded 'definitely no' and a further 24% responded 'probably no'. Upon completion of the e-learning, post survey responses indicated statistically significant improvements (P < 0.001) in eight of the nine items. When asked if the e-learning had increased their knowledge about home dialysis, 99% of participants responded 'definitely yes'. CONCLUSION: A suite of web-based education modules can successfully deliver significant improvements in awareness and knowledge around home dialysis therapies.

The HOME network: an Australian national initiative for home therapies.

BACKGROUND: Longer, more frequent dialysis at home can improve life expectancy for patients with chronic kidney disease. Increased use of home dialysis therapies also benefits the hospital system, allowing for more efficient allocation of clinic resources. However, the Australian and New Zealand Data Registry statistics highlight the low uptake of home haemodialysis and peritoneal dialysis across Australia. OBJECTIVE: In August 2009, the Australia's HOME Network was established as a national initiative to engage and empower healthcare professionals working in the home dialysis specialty. The aim was to develop solutions to advocate for and ultimately increase the use of home therapies. This paper describes the development, achievement and future plan of the Australian HOME Network. ACHIEVEMENTS: Achievements to date include: a survey of HOME Network members to assess the current state of patient and healthcare professional-targeted education resources; development of two patient case studies and activities addressing how to overcome the financial burden experienced by patients on home dialysis. Future projects aim to improve patient and healthcare professional education, and advocacy for home dialysis therapies. CONCLUSION: The HOME Network is supporting healthcare professionals working in the home dialysis specialty to develop solutions and tools that will help to facilitate greater utilisation of home dialysis therapies.

Australian consumer perspectives on dialysis: first national census.

AIM: The percentage of people in Australia who undertake home dialysis has steadily decreased over the past 40 years and varies within Australia. Consumer factors related to this decline have not previously been determined. METHODS: A 78-question survey was developed and piloted in 2008 and 2009. Survey forms were distributed to all adult routine dialysis patients in all Australian states and territories (except Northern Territory) between 2009 and 2010. Of 9223 distributed surveys, 3250 were completed and returned. RESULTS: 49% of respondents indicated they had no choice in the type of dialysis and 48% had no choice in dialysis location. Respondents were twice as likely to receive information about haemodialysis (85%) than APD (39%) or CAPD (41%). The provision of education regarding home modalities differed significantly between states, and decreased with increasing patient age. Additional nursing support and reimbursement of expenses increased the proportion of those willing to commence dialysis at home, from 13% to 34%. State differences in the willingness to consider home dialysis, the degree of choice in dialysis location, the desire to change current dialysis type and/or location, and the provision of information about dialysis were identified. CONCLUSION: The delivery of pre-dialysis education is variable, and does not support all options of dialysis for all individuals. State variances indicate that local policy and health professional teams significantly influence the operation of dialysis programs.