Project objectives

The overarching aim of our study was to explore the differing perspectives of patients, primary care clinicians, renal physicians and public health doctors on identification and treatment of early stage CKD in primary care.

The outputs we stated we would produce were:

1. Healthtalkonline website to support and inform other people going through similar experiences. This will also be freely available for teaching and learning for clinicians and others involved in the care of people with CKD;
2. Publication in peer-reviewed clinical or social science journal;
3. Based on findings from the professional and the patient interviews, we will summarise and synthesise the differing perspectives to develop guidance for GPs.

Changes to project objectives

Anne Kennedy was the original PI for the grant, but after moving to Southampton she was no longer able to lead the work and Jeremy Horwood took over as PI.

Originally, data collection was to be conducted in Bristol and Manchester. With the departure of Anne Kennedy the data collection (patient and clinician interviews) was conducted by researchers employed in Bristol and Oxford. The 0.8FTE researcher that was to be employed in Manchester was employed in Bristol to cover this extra work.

These contractual changes delayed the start of the project.

Brief summary

Methods

Semi structured interviews were conducted with patients, primary care clinicians, renal consultants and public health physicians.

We aimed for a maximum variation sample of patients, recruited through a range of routes and from different areas of the country, to obtain the broadest possible range of perspectives. Forty-six people were recruited in total: 37 via general practice, two from the OxRen cohort study, one by snowballing (where one contact leads to another), one by advertising on kidney related internet forums, and five through an advert in a kidney charity magazine. Twenty-six were male and 34 were aged over 60. Two were from minority ethnic groups. Stage of CKD was not known for seven participants, 35 had stage 3, two had stage 2, and two had been recently referred to specialist care because of more advanced kidney disease but could reflect back on their experiences of being monitored in primary care. Interviews were conducted in the participant’s own home, and followed a narrative then semi-structured format. The interviews were transcribed verbatim and returned to the participant for review. For the purposes of presentation of the interview extracts on www.healthtalk.org, 28 gave permission for their interviews to be recorded and presented in video format, 14 for audio format, and 3 for text-only format. One person withdrew from the study after interview.

Purposive sampling was used to capture maximum variation in experience of clinicians with responsibility for patients with CKD, either individually or at population level. Thirteen general practices in Bristol were purposively sampled to include: practices serving a range of deprived and affluent areas using the practice level indices of multiple deprivation (IMD) scores14, size of patient list, percentage of older people, and number of patients on the CKD register. General practitioners (GPs) and practice nurses were purposively sampled for maximum variation across: gender, year of qualification and GP practice. A total of 25 clinicians were recruited and interviewed: 16 GPs, three Practice Nurses. In addition, we opportunistically recruited and interviewed four renal consultants and two public health physicians.

Although a topic guide was used to focus the interviews, participants were able to speak freely about their experiences and raise topics not covered by the guide. The topic guide was informed by a review of relevant literature and suggestions from our multi-professional study team and advisory group and modified as data analysis progressed. Topics included: perceptions of early stage CKD (stage 3); experiences of CKD diagnosis, management and monitoring; opinions of current guidelines. With written informed consent, all interviews were audio-recorded or video recorded and transcribed verbatim, anonymised and imported into NVivo 10 qualitative software programme and analysed thematically. Analysis began alongside data collection, with ideas from early analysis informing later data collection in an iterative process until data indicated saturation. Analysis of individual transcripts commenced with open coding grounded in the data. This generated an initial coding framework, which was added to and refined as new data were gathered. Codes were gradually built into broader categories through comparison across transcripts and higher-level recurring themes were developed.

Findings

Clinicians often avoid using the term ‘CKD’ when talking to their patients with early-stage kidney impairment in an attempt to avoid causing unnecessary anxiety. Use of words like ‘kidney damage’ or ‘kidney failure’ were seen as quite frightening to patients, and the term ‘chronic’ was sometimes misinterpreted as meaning serious, whereas a description of the decrease in kidney function as a percentage or stage seemed to be less alarming. However, the exact meaning of the test results was often unclear and those who were told their CKD stage didn’t always understand what this meant. Patients’ accounts of receiving information about their kidney health echoed the phrases described by health professionals. However, patient interpretations showed some of these phrases to be unhelpful, raising further questions and adding to, rather than diminishing, initial concerns.

The study protocol had specified that health professionals should only recruit patients who had been told either that they had CKD or that their kidney function was being monitored. We did this to rule out the possibility that participants might learn about their diagnosis through taking part in the interview. However, despite best efforts to ensure that all participants entering into the study would at least be aware that they were being monitored for their kidney function, and despite health professionals’ assurances that they had told participants the reason why they were approached, a significant minority of participants recruited via health professionals lacked awareness that their kidney function was impaired. Some described having received only vague and partial information, resulting in them being uncertain as to whether their kidney health was something they should try and find out more about. Some patients had found out diagnosis by accident - saw a different health professional who assumed they knew, or when they received copies of referral letters or test results – leaving some feeling angry that they had not been told about their diagnosis.

GP’s attempt to reassure patients that their kidney impairment was nothing to worry about, without providing explanatory information about the condition, which could leave patients concerned. Patients wanted to know more about possible causes, the meaning of test results, and whether they could do anything to prevent further decline.

In understanding the tensions around the management of early stage CKD in primary care and in the context of English national guidelines and QOF, we identified an overarching theme of cognitive dissonance rooted in the logic of contrasting models of health care and ethical decision making. The inclusion of the words ‘chronic’ and ‘disease’ in the term, CKD, was also identified as a source of tension for clinicians. This term appears to be too simplistic to describe a medical construct that primarily relates to increased risk of morbidity, particularly cardiovascular morbidity.

However, despite the issues of contention and dissonance our study found significant agreement between generalist and specialist clinicians’ regarding categorising people as having CKD on the basis of reduced eGFRs alone as oversimplifying a complex picture of interdependent health and demographic factors, posing ethical dilemmas around diagnosis and disclosure. Given the multi-layered nature of the CKD construct and over-inclusive methods of identification, based on national guidance at the time, it is not surprising that the purpose of monitoring early stage CKD in primary care seemed unclear and there was tension around disclosing a potentially frightening diagnosis to patients. Clinicians’ agreed the need for improved detection of progressive renal disease and a move towards a patient centred, holistic assessment with renal function being viewed as a marker of ‘wellbeing’ and vascular health.

Objective 1: Produce Healthtalkonline website to support and inform other people going through similar experiences.

The study was published in spring 2015 on www.healthtalk.org as a resource on kidney health for the public and a training tool for health professionals. On the website patients can view video clips from interviews with people talking about their experiences of early stage CKD and learn about why kidney performance may begin to decline and who is at risk, how kidney performance is measured and why it is important to check it regularly. Patients can also learn about how people find out that they have early signs of kidney problems, their experiences of having regular check-ups, their information preferences, and the ways in which they try to look after their health.

Twenty themes have been written up as topic summaries for www.healthtalk.org, illustrated with extracts from the interviews. In addition three introductory summaries have been written, illustrated with video clips from GPs, to provide some factual background information to CKD and the importance of monitoring it. All the summaries have been checked by another experienced researcher familiar with all the data, and by members of the expert project advisory panel.

The topic summary titles are as follows:

1. Who is this for?;
2. Why is kidney health important?;
3. How and why is kidney function monitored?;
4. How did people find out about their kidney impairment/;
5. Thoughts and feelings at diagnosis;
6. Awareness of kidney disease and beliefs about possible causes;
7. When should doctors inform people of a mild kidney impairment;
8. Check-ups in general practice and hospital;
9. Diagnosing problems with kidney health;
10. Tests used to monitor kidney health;
11. Receiving and making sense of test results;
12. Attitudes towards monitoring kidney health;
13. The words doctors used to explain kidney impairment;
14. Sources of information;
15. People’s ongoing information and support needs;
16. Controlling blood pressure;
17. Lifestyle changes 1: healthy lifestyles, smoking and alcohol;
18. Lifestyle changes 2: diet, weight loss and physical activity;
19. Complementary and over-the-counter medicines;
20. Expectations, hopes and concerns for the future.

Objective 2: Publication in peer-reviewed clinical or social science journal.

A paper titled ‘Understanding tensions and identifying clinician agreement on improvements to early-stage chronic kidney disease monitoring in primary care: a qualitative study’ has been submitted to BMJ Open.

Objective 3: Based on findings from the professional and the patient interviews, we will summarise and synthesise the differing perspectives to develop guidance for GPs.

Our healthtalk.org module provides an insight into the experiences of people who are being monitored for early signs of kidney problems – what information they have received, what they found helpful and unhelpful, their key questions and concerns, and their views on how monitoring could be made more meaningful to them. We are working to have our healthtalk.org module included in both local and nation training for primary care health professionals and we are working with the RCGP Clinical Priority Programme on Kidney Care to have our findings included in their upcoming position statement on Kidney Care.

Conclusions

The findings of this study suggest limited or partial disclosure of CKD diagnoses, and patients having a lack of awareness of the consequences of receiving a CKD diagnosis and if they could do anything to prevent further decline. Some Clinicians’ current strategies for delivering diagnostic information to patients with early stage CKD in primary care are ineffective in helping understand their condition. Attempting to reassure patients that their kidney impairment was nothing to worry about, without providing further explanation about the condition, left some patients concerned and wanting to know more about possible causes, the meaning of test results, the implications for them and whether they could do anything to prevent further decline. The findings cast uncertainty on the benefit of monitoring early stage CKD in an attempt to limit the future costs and consequences, if clinicians often avoid using the term ‘CKD’ in an attempt to avoid causing unnecessary anxiety, resulting in patients lacking in knowledge regarding the meaning of a CKD diagnosis and being able to access and act on appropriate lifestyle advice.

Clinicians agreed on the need for greater understanding of renal decline and increasing proteinuria testing to reduce over diagnosis and identify those patients who were at risk of progression and further morbidity and who would benefit from early intervention. Clinicians recommended adopting a holistic approach to patients with CKD representing a barometer of overall health.

The updated 2014 NICE clinical guidelines for CKD include recommendations to increase proteinuria testing and not to determine the management of CKD solely by the age of the patient, which addresses some of the concerns of GPs reflected in our study. Anchoring the meaning and purpose of CKD monitoring by increased proteinuria testing and assessment of risk, on an individual patient basis, may help to allay some of the ethical and moral reservations clinicians expressed around the medicalization of ‘normality’ and harm to patients in being given a disease label. As national policy moves towards the use of renal markers that are more closely associated with cardiovascular risk, such as cystatin C, the link between a CKD diagnosis and true increased cardiovascular risk will become more accurate. In turn, this may improve the implementation of guidance as GPs experience increased congruity with the strategic and philosophical aims of diagnosis and monitoring of CKD in primary care. However, we do not yet know how the new NICE guidance will be implemented, and how GPs will respond to the introduction of another eGFR formula (CKD-EPI) which will alter CKD diagnoses and stages for some patients, although this may lead to some resolution of clinician dissonance observed in this study. This may present a positive step as it will limit ‘over diagnosis’ of CKD and therefore reduce concerns expressed by our participants. However, as the ability to determine true cardiovascular risk becomes more accurate within the cohort of patients currently identified as having CKD, there will be a need for increased understanding around how to translate that biomedical knowledge into improved diagnostic and monitoring strategies, which have clear value to both GP and patient.

Plain English summary

Background

NICE guidelines incentivise GPs to record and monitor patients who have mild chronic kidney disease (CKD) to enable early identification of those at risk of further decline. Relatively few people identified with the early signs of renal impairment (CKD stages 1 to 3) will progress to the later stages of kidney disease, so some patients with no symptoms of an illness may be being unduly medicalised. However, there is awareness that poor renal function is a cardiovascular risk factor and is under-reported in primary care. There is little current guidance for how best to tell people they have the early stages of kidney disease with its associated risks. The study aimed to explore health professionals’ and patients’ experiences of early stage CKD. Interviews were conducted with 45 patients (aged 36-94, 25 male) and 25 clinicians. Data were digitally recorded, transcribed verbatim and analysed thematically.

Findings

Findings revealed a gap between what clinicians seek to explain and what patients may understand. The term ‘CKD’ was considered a misnomer by primary care professionals who often avoided using it when talking to their patients with early stage kidney impairment in an attempt to avoid causing unnecessary anxiety. Patients’ accounts of receiving information about their kidney health echoed the phrases described by health professionals. However, patient interpretations showed some of these phrases to be unhelpful, raising further questions and adding to, rather than diminishing, initial concerns. Clinicians agreed on the need for greater understanding of renal decline and increasing proteinuria testing to reduce over diagnosis and identify those patients who were at risk of progression and further morbidity and who would benefit from early intervention. Clinicians recommended adopting a holistic approach to patients with CKD representing a barometer of overall health.

Conclusions

Some clinicians’ current strategies for delivering diagnostic information to patients with early stage CKD in primary care are ineffective in helping understand their condition. Attempting to reassure patients that their kidney impairment was nothing to worry about, without providing further explanation about the condition, left some patients concerned and wanting to know more about possible causes, the meaning of test results, the implications for them and whether they could do anything to prevent further decline. The introduction of new NICE CKD guidelines in 2014, may help to resolve some of the tensions clinicians expressed regarding the over medicalization of patients with a CKD diagnosis.

Dissemination

Published articles

1. Simmonds, R. Evans, J. Feder, G. Blakeman, T. Lasserson, D. Murray, E. Bennert, K. Locock, L. Horwood, J. Understanding tensions and identifying clinician agreement on improvements to early-stage chronic kidney disease monitoring in primary care: a qualitative study. BMJ Open 2016;6:e010337 doi:10.1136/bmjopen-2015-010337.
   http://bmjopen.bmj.com/content/6/3/e010337.full

Presentations

1. Horwood, J. Bennert, K. Evans, J. Simmonds, R. Blakeman, T. Locock,L. Murray,E. Feder, G. (2015) Experiences of kidney monitoring for early stage chronic kidney disease in primary care: findings from the ESKIMO study. NIHR School of Primary Care Research Showcase, University of Oxford, 26th September.
2. Horwood, J. (2015) Introducing the healthtalk site on kidney health. RCGP Clinical Priority Programme on Kidney Care, GP Network for Kidney Care. RCGP, London, 4th February.
3. Horwood, J. Bennert, K. Evans, J. Simmonds, R. Blakeman, T. Locock,L. Murray,E. Feder, G. (2014) Experiences of kidney monitoring for early stage chronic kidney disease in primary care: findings from the ESKIMO study. NIHR School of Primary Care Research Showcase, University of Oxford, 26th September.
4. Bennert, K., Evans, J., Locock, L., Feder, G., Blakeman, T., Simmonds, R., Murray, E., Horwood, J. (2014).  ‘If there was something wrong I’d want to know’: Patients’ Experiences and expectations of Diagnostic Information for Early Stage Chronic Kidney Disease. BSA Medical Sociology Group Annual Conference. 12th September, Aston University.

Healthtalk web resource

The study produced healthtalk.org module which was launch on 12 March 2015 to coincide with World Kidney Day - www.healthtalk.org/kidney-health.

Web links

We have negotiated for our healthtalk.org module to be featured as a link on a number of patient/public websites and the RCGP website (A to Z Clinical resources - Kidney care):

• http://www.nhs.uk/Conditions/Kidney-disease-chronic/Pages/Peters-story.aspx;
• https://www.thinkkidneys.nhs.uk/resources/;
• http://www.wellaware.org.uk/organisations/16954-health-talk-kidney-health-resource#&panel1-1&panel2-1;
• http://www.rcgp.org.uk/clinical-and-research/clinical-resources/kidney-care.aspx.

Media

1. 12/03/2015 - Media releases were distributed by University of Bristol and University of Oxford to publicise the launch of the healthtalk.org module. Below are some examples of news stories that were created in response to the media release:
• http://www.bristol.ac.uk/news/2015/february/chronic-kidney-disease.html;
• http://www.bristol.ac.uk/primaryhealthcare/news/2015/kidney.html;
• www.phc.ox.ac.uk/news/new-website-aims-to-improve-understanding-of-chronic-kidney-disease;
• http://www.spcr.nihr.ac.uk/news/communicating-kidney-health;
• http://www.worldkidneyday.co.uk/wp-content/uploads/WKD_2015_KCT_news_release_final.pdf;
• http://medicalxpress.com/news/2015-03-website-aims-chronic-kidney-disease.html;
• http://www.healthbusinessuk.net/news/12032015/chronic-kidney-disease-website-launch;
• http://healthwatchbristol.co.uk/news/university-of-bristol-launch-new-website-to-inform-patients-about-chronic-kidney-disease/.
2. 21/07/2015 – Study featured in RCGP Clinical News e-bulletin.

Public involvement

We had two patient representatives who were members of our advisory panel. The patient representatives informed our sampling strategy, recruitment procedure and interview topic guides and assisted with patient recruitment. The patient representatives also assisted with the development of the topic summaries for our Healthtalk.org module, advised on the interpretation of the data and helped publicising the Healthtalk.org module after its launch.

Impact

We are disseminating the www.healthtalk.org/kidney-health widely as it is a resource for both patients and doctors to support and inform people going through similar experiences. The video clips are also a free resource for teaching and training to improve understanding of how patients view and experience the diagnosis and management of early stage chronic kidney disease. We are currently working with the following organisations to publicise our Healthtalk.org module by having our videos of patients experience included in their training:

• RCGP – elearning module on ‘Kidney Health in General Practice’;
• North Bristol NHS Trust - CKD training day for GPs;
• University of the West of England – CKD training day for primary care nurses;
• Bristol Health Partners Health Integration Team for CKD – understanding patients experience of early stage CKD for primary care health professionals;
• British Kidney Patient Association – raising awareness of CKD.

We are working with the RCGP Clinical Priority Programme on Kidney Care to have our findings included in their upcoming position statement on Kidney Care.

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 120)

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.