PATIENT PERSPECTIVES ON DIALYSIS: FIRST NATIONAL CENSUS 2011
Results and details of this first national census of patient perspectives on dialysis in Australia are contained in these reports:
Patient Perspectives on Dialysis - Summary Report
Consumer Perspectives on Dialysis - full report
Citation: Consumer Perspectives on Dialysis: First National Census. Kidney Health Australia - Melbourne 2011
© Kidney Health Australia - January 2011. This report is copyright.
Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced without written permission from Kidney Health Australia. Requests and enquiries concerning reproduction and rights should be directed to Kidney Health Australia, PO Box 9993, Melbourne VIC 3001. This publication was funded under an unrestricted educational grant from Amgen. Additional funding for the Victorian component was received from the Sydney Maxwell Welland Estate (with the support of Equity Trustees) and The Eirene Lucas Foundation and from Queensland Health for the Queensland component.
Why undertake this census?
Kidney Health Australia conducted this census to investigate the experience, perceptions and preferences of people currently undertaking dialysis in Australia. This census attempts to better understand why patients use certain types of dialysis in certain locations and what the barriers may be for undertaking dialysis in the home.
Every day six Australians start dialysis. The increase in numbers is being fuelled by Australia’s ageing population, obesity and diabetes in the community. Research into patient perspectives on dialysis is vital, if Australia wishes to improve its dialysis services in line with the rising numbers of potential dialysis patients.
Chronic Kidney Disease (CKD) occurs when a person suffers from gradual and usually permanent loss of kidney function over a period of months to years. End-Stage Kidney Disease (ESKD) occurs when the kidneys are no longer able to function at a level needed for daily life, usually when CKD has worsened to the point at which kidney function is less than 10% of normal.
As per statistics from the Australia and New Zealand Dialysis and Transplant Registry 33rd ANZDATA Annual Report 2010 - data to December 2009: there were 10,391 people on dialysis in Australia. See further summary statistics on chronic kidney disease (CKD) in Australia on our Fast Facts on CKD webpage.Treatment for ESKD in the form of dialysis is expensive - the annual cost of dialysis per patient per year is currently:
-
Hospital Haemodialysis $79,072
-
Satellite Haemodialysis $65,315
-
Home Haemodialysis (HHD) $49,137
-
Home Peritoneal Dialysis (PD) $53,1126
Research suggests home dialysis (HHD and PD) is not only more cost effective for the Australian health-care system, but it can also positively impact on the patient’s life, enabling increased mobility and independence. The percentage of patients undertaking home haemodialysis has fallen from about half of all dialysis patients in the 1970s to approximately 9% in 2009.
Methodology
In 2010, Kidney Health Australia conducted an Australia-wide census of all adult patients receiving routine dialysis services - the first of its kind. The survey included 78 questions relating to:
- Dialysis treatment type and location
- Dialysis and transplantation
- Dialysis choice
- Preferred dialysis type and location
- Changing dialysis type or location
- Satisfaction with dialysis
- Travel to and from dialysis
- Holidays on dialysis
- Dialysis information and education
- Clinical support
- Psychosocial support
- Home dialysis treatment
For the majority of hospital and satellite patients, survey forms were handed out to them by nurses at their Renal Unit as they came in for their dialysis. Alternatively, survey forms were posted directly to hospital and satellite patients in Western Australia and a smaller number of patients in New South Wales and Victoria.
For home-based patients, surveys were posted by Renal Units to patients’ homes. Reply-paid envelopes were supplied for the return of the surveys to Kidney Health Australia. The survey received a 35% response rate – of the 9,223 surveys distributed, 3,250 surveys were completed.
Major conculsions
The survey identified significant opportunities for improving the uptake of home dialysis in Australia. Results indicate that improvements might be expected in the uptake of both peritoneal dialysis performed at home and home haemodialysis, if earlier, more consistent, more comprehensive educational choice regarding modality and location were given to patients.
- There was a clear bias against provision of information relating to peritoneal dialysis compared with haemodialysis.
- Patients are generally comfortable once they are established on dialysis; this implies that to improve home dialysis rates, patients need to be exposed to home therapies early to avoid the “status quo” bias against changing to these therapies once established.
- Patients indicated they would be more likely to consider home modalities if appropriate clinical and financial support for people dialysing at home was provided.
Statistical results
- A total of 9223 surveys were distributed and 3250 questionnaires were received. This provided an estimated response rate of 35%.
- Estimated response rates for each state/territory ranged from 22% in Western Australia to 63% in Tasmania.
- The demographics of respondents are listed in Table 1 Consumer Perspectives on Dialysis - full report; compared with national data from the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA), there was a greater proportion of survey respondents aged between 50 and 70 years.
- Compared with national data from ANZDATA, the survey sample had a higher proportion of patients utilising hospital haemodialysis (42% versus 23%) and a lower proportion dialysing at a satellite centre (25% versus 45%).
Associated research publication
Views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies
Morton et al: BMJ 2010; 340: c112. Published online 2010, January 19.. doi: 10.1136/bmj.c112 PMCID: PMC2808468 Correspondence: R L Morton Email: rachaelm@health.usyd.edu
Surveys on Home Dialysis - from a health professional perspective
How Australian nephrologists view Home Dialysis: Results of a national survey
Nephrology 2011;16:446-52. Ludlow MJ, George CRP, Hawley CM, Mathew TH, Agar JWM, Kerr PG, Lauder LA
Australian Nephrology Nurses Views on Home Dialysis: A National Survey
Lauder, LA, Ludlow, MJ, Hawley, CM, Richardson, EP, Mathew, TH & Munro, CE (2011). Australian Nephrology Nurses views on home dialysis: A National Survey. Ren Soc Aust J 7(1). 6-12
Quick links: Health Fact Sheets - Health Publications - Recommended weblinks
Quick links for health professionals: CKD in Australia I Health Professional Publications I Publications - key database
UPDATED 11 NOVEMBER 2011
|