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22/02/2009
Patients' Experiences and Perspectives of Living with Chronic Kidney Disease
| Media Release |
| Patients' Experiences and Perspectives of Living with Chronic
Kidney Disease |
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Australians diagnosed with Chronic Kidney Disease initially
find it difficult to understand and accept the diagnosis, causing
them to feel vulnerable and confused, according to a new research
report released today.
The Report "Patients' Experiences and Perspectives of
Living With CKD" funded by Kidney Health Australia and
published this week online by the prestigious "American Journal
of Kidney Disease", says many of the patients in the study
expressed feeling shock and described the experience as traumatic
and overwhelming. Professor
Jonathan Craig, one of the author's of the report said that the
study performed entirely on Australian patients was the first to
systematically assess attitudes and experiences. The study found
that "frequently participants felt trapped in a paradox of
appearance versus reality. Internally, participants felt very ill
and fatigued, but externally, they appeared well and healthy."
"However, on the other hand some transplant recipients felt well
and refused to be labelled as having Chronic Kidney Disease."
Anne Wilson, CEO of Kidney Health Australia said because most
Chronic Kidney Disease doesn't cause symptoms it is difficult to
communicate about to the public and this new research report will be
invaluable in providing a spotlight on the challenges people face.
Dr Tim Mathew, Medical Director of Kidney Health Australia said
the new research report will perform an important role in the
medical area putting forward the views of patients directly in the
clinical environment.
"The report says explicit incorporation of patients' values and
preferences is important in health care decision making and make the
point there is little information about this topic for patients with
Chronic Kidney Disease."
Five major themes were identified: (1) personal meaning of
Chronic Kidney Disease (2) managing and monitoring health, (3)
lifestyle consequences, (4) family impact, and (5) informal support
structures.
The major points raised by people in the study include:
Patients had to adjust to the disruptive and permanent
implications of the illness on their physical health, identity,
emotions, family, lifestyle, relationships, and employment.
The overwhelming fatigue, complex treatment regimens, side
effects, and liquid and diet restrictions constrained patients'
lives.
Patients appreciated specialist care, but described the health
care system as nonintegrated and believed they received insufficient
information and psychosocial support.
Choice of treatments was based on lifestyle, family impact, and
physical comfort, seldom on clinical outcomes.
Time was needed to comprehend the diagnosis, cope with
uncertainty, integrate their treatment regimen into their daily
routine, and reestablish a sense of normality in their lives.
Rather than focusing on clinical targets, greater attention may
need to be given to providing information and psychosocial and
practical support at a patient-level not organ-specific level, to
maximize patient quality of life.
Click
here to download a pdf copy of the report - "Patients'
Experiences and Perspectives of Living With CKD"
Media Enquiries:
Jonathan Craig Centre for Kidney Research,
The Children's Hospital at Westmead,
Mobile: 0417 020 076
Dr.
Alison Tong First Author Mobile: 0414 276 883
Anne Wilson, CEO Kidney Health Australia Mobile: 0400 165
391
Dr Tim Mathew, Medical Director Kidney Health Australia
Mobile: 0416 149 863
Ron Smith Corporate Media
Communications Kidney Health Australia Mobile: 0417 329 201
From the:
1 Centre for Kidney Research, The Children's
Hospital at Westmead, Westmead;
2 School of Public Health, The
University of Sydney;
3 Population Health, Sydney South West
Area Health Services;
4 Transplantation, Royal Prince Alfred
Hospital, The University of Sydney, Sydney, NSW;
5 NorthWest
Dialysis Service and Department of Nephrology, Royal Melbourne
Hospital, Melbourne;
6 Western Clinical School, Westmead
Hospital, Westmead; and
7 School of Population Health, University
of Queensland, Princess Alexandra Hospital, Queensland, Australia.
Allison Tong, PhD,1,2 Peter Sainsbury, PhD,2,3
Steven Chadban,
PhD,4 Rowan G. Walker, PhD,5
David C. Harris, PhD,6 Stacy M.
Carter, PhD,2
Bronwyn Hall, MAAPD,2 Carmel Hawley, MBBS,7
and
Jonathan C. Craig, PhD1,2
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