News

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.

ENDS

Notes to editors

Contact: Jamie Stevenson Tel: 02380 597974 jamie.stevenson@soton.ac.uk

Paper and photographs on request

Interviews on request

**There 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

Funding

This study was funded by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Greater Manchester.

The NIHR is funded by the Department of Health to improve the health and wealth of the nation through research. The NIHR is the research arm of the NHS. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems