Self management of chronic kidney disease - 2016's Research Paper of the Year

Dr Thomas Blakeman, Clinical Senior Lecturer in Primary Care at Manchester University, and GP in Leeds

Disclosure of early stage Chronic Kidney Disease (CKD) in primary care: views and experiences of patients involved in a trial to support self-management.1
Gavin Daker-White, Anne Rogers, Anne Kennedy, Thomas Blakeman, Christian Blickem and Carolyn Chew-Graham

Early stage CKD is an asymptomatic “pre-condition” where clinical monitoring (or treatments in certain circumstances) and self-management of lifestyle are seen as key to preventing potentially serious health problems further down the line. Thus, at the time when the study was conducted (2012-2014), through the Quality and Outcomes Framework (QOF), UK general practice was financially incentivised to diagnose, monitor and support management for people with CKD. Incentivised management focused on blood pressure control to maintain cardiovascular health and prevent progression of kidney disease.2 However, CKD is more common in the context of multimorbidity and some GPs might be concerned about over burdening patients with a diagnosis which some view as a normal part of the ageing process.3

In order to explore patients’ experiences of the diagnostic disclosure of CKD in primary care settings, we interviewed 26 patients who had previously been recruited to an intervention trial in early stage CKD.4 In the qualitative interview study, patients were selected in order to explore a range of experiences and opinions within a comparative case study design.

Interviewees related a wide range of perceptions concerning a diagnosis of early stage CKD. Many patient accounts suggested that they had only received a partial or limited disclosure of having CKD; with many believing that it was “nothing to worry about.” Some denied that they had CKD or that a health professional had ever used the word “kidneys” in a consultation. This was surprising given that all had undergone formal consent procedures for a CKD trial, with eligible patients being identified from disease registers at GP practices and with recruitment efforts aimed to ensure practices had the opportunity to discuss CKD diagnosis with patients prior to the trial.3 The findings of this exploratory study highlight a tension between diagnosis as an incentivised and ‘paid for’ activity within clinical systems vs. diagnosis as a means of enabling patients to enact self-management strategies to further better health. To put it simply, if a patient is told that early stage CKD is “nothing to worry about,” then why would they adapt their diet, exercise and other lifestyle factors in pursuance of cardiovascular health?

The example of early stage CKD highlights a conundrum for patients as well as their doctors and nurses. There is a clash between the guidelines around CKD and the differing care needs of individual patients. For example, it is important to give information about a diagnosis of ‘early CKD’ in a way that makes sense to the patient and in the context of their other illnesses and social circumstances. Findings from the study highlight a need for more meaningful dialogue concerning the relevance of kidney health.

Results from the CKD ‘self-management support’ trial suggest that it is possible to support patients with CKD in terms of maintaining blood pressure control and quality of life without a detrimental effect on anxiety.4

Since the study was published, GPs continue to be financially reimbursed for maintaining a CKD register though they are no longer incentivised for monitoring and managing patients with CKD.2 At the same time, the NHS Five Year Forward View emphasises tackling Acute Kidney Injury (AKI) as a priority and a mechanism to improve patient safety and health outcomes across the NHS.5 The rationale for maintaining a CKD register requires clarity for both clinicians and patients. With evidence that patients with CKD are at increased risk of complications during episodes of acute illness, patient, carer and professional engagement in the national Think Kidneys Programme (https://www.thinkkidneys.nhs.uk/) may provide a route to broaden and tailor the dialogue.6 The development and implementation of patient and public resources is essential in order to address  current gaps in knowledge and care delivery.7 8 9 Kidney health in the context of cardiovascular health, medicines management and the prevention of AKI may support a shift towards effective minimally disruptive medicine.10

1Daker-White G, Rogers A, Kennedy A, et al. Non-disclosure of chronic kidney disease in primary care and the limits of instrumental rationality in chronic illness self-management. Social Science & Medicine 2015;131(0):31-39. doi: http://dx.doi.org/10.1016/j.socscimed.2015.02.035
2NHS Employers. Summary of changes to QOF 15/16 England only. NHS Employers, 2014. Available at: http://www.nhsemployers.org/your-workforce/primary-care-contacts/general-medical-services/quality-and-outcomes-framework/changes-to-qof-2015-16. Accessed 12 August, 2016
3See, e.g.  R. Moynihan, R. Glassock, J. Doust. Chronic kidney disease controversy: how expanding definitions are unnecessarily labelling many people as diseased. BMJ, 347 (2013) http://dx.doi.org/10.1136/bmj.f4298
4Blickem, C, Blakeman T, Kennedy A, Bower P, et al. "The clinical and cost-effectiveness of the BRinging Information and Guided Help Together (BRIGHT) intervention for the self-management support of people with stage 3 chronic kidney disease in primary care: study protocol for a randomized controlled trial." Trials 14, no. 1 (2013): 1. http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-28
5NHS England. The Forward View into Action: Planning for 2015/16: NHS England Publications, 2014.
6National Institute for Health and Care Excellence. Acute Kidney Injury: Prevention, Detection and Management of Acute Kidney Injury up to the Point of Renal Replacement Therapy. CG169 London: NICE 2013.
7NHS England, UK Renal Registry, Think Kidneys. Understanding what the public know about their kidneys and what they do. Findings from Ipsos MORI survey—July 2014: Think Kidneys, 2014.
8NHS England, UK Renal Registry, Think Kidneys. Campaign. 2016 https://www.thinkkidneys.nhs.uk/campaign/
9National Kidney Disease Education Program Pharmacy Working Group. Keeping Kidneys Safe - Know How Medicines Affect the Kidneys. National Institutes of Health, 2016
https://www.youtube.com/watch?v=eWlx6C9Jv5g&feature=youtu.be
10May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ 2009;339:b2803. doi: 10.1136/bmj.b2803 [published Online First: 2009/08/13]

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