29 September 2016
Research by a team from the National Institute for Health Research (NIHR) found that
people diagnosed with signs of Chronic Kidney Disease* often did not realise
how serious it was, or may not even know they have it.
The publication won the NIHR Collaboration for Applied Health Research and Care (CLAHRC) team recognition
from the Royal College of General Practitioners in their awards ceremony in London yesterday.
(Wednesday 28 September)
The paper, entitled ‘Non-disclosure of Chronic Kidney Disease (CKD) in primary care’, was
published in the journal Social Science and Medicine and explores how patients
learn about and react to a diagnosis of early stage CKD – particularly as some
GPs routinely register patients as early stage CKD but do not always fully
disclose the diagnosis to their patient.
The partial or non-disclosure of diagnosis by GPs is at the heart of the paper. It raises
questions over the purpose of CKD as diagnosis to support patient self-management.
The rationale for incentivising GP practices to maintain a CKD register
requires clarity for both clinicians and patients.
*Chronic Kidney Disease (CKD) is a common condition often associated with getting older.
Anyone can get it. CKD can get gradually worse over time and eventually
the kidneys may stop working altogether, but this is uncommon.
“The paper examines patients’ experiences and views on the moral problems, attitudes
and implications of the non-disclosure or disclosure by GPs of a condition only
discovered through blood tests (early stage Chronic Kidney Disease).”
Prof Anne Kennedy from NIHR CLAHRC Wessex adds. “I’m proud and excited to be an
author on the Research Paper of the Year awarded by the Royal College of
General Practitioners, and even more proud that we won the overall prize.”
Prof Anne Rogers, who was the PI on the project, is another co-author and Research
Director at NIHR CLAHRC Wessex. “The results of this winning paper have
implications for focussing on the actions, values and complexities of people in
undertaking self-directed support for managing a long term condition and
has informed our most recent work on designing and rolling out an intervention focusing on
connecting people to acceptable and person centred resources for living
everyday life with a long term condition.”
“Patient self-management is a critical factor in positively managing symptoms and
treatments in chronic kidney disease as well as other diseases; I am delighted
for my colleagues that our work in highlighting non-disclosure of CKD diagnoses
may help support more meaningful dialogue and in doing so, help patients take
more control of their health,” said Dr Daker-White, Research Fellow with the
University’s NIHR Greater Manchester Primary Care Patient Safety Transitional
Research Centre (PSTRC).
The Prize money of £1000 will be split between the lead authors for the paper who are
based in the universities of Southampton, Manchester and Keele.
Notes to editors
Jamie Stevenson Tel: 02380 597974 firstname.lastname@example.org
photographs on request
Interviews on request
are 13 National Institute for Health Research (NIHR) Collaboration for
Leadership in Applied Health Research and Care (CLAHRC’s) in England CLAHRC
teams from across England will often collaborate with their local NHS partners
and other CLAHRC’s to look at common health conditions. In the case of this
research publication some of the work was conducted in Greater Manchester before continuing at
Keele University (CLAHRC West Midlands) and the Wessex region by a
team based at the University of Southampton
was funded by the National Institute for Health Research Collaboration for
Leadership in Applied Health Research and Care (NIHR CLAHRC) Greater
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