The language of chronic kidney disease diagnosis: a qualitative study of patient experiences and primary care professionals’ views
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. Previous research has found unease amongst GPs about applying a diagnostic label of CKD to patients regardless of age and other clinical factors, and uncertainty about whether and how to communicate such diagnostic information to patients. The study aimed to explore health professionals’ and patients’ experiences of discussing early stage CKD in primary care, with special attention to the language health professionals use in delivering diagnostic information and the meanings patients attach to it.
One-off, semi-structured face to face interviews were conducted with maximum variation samples of patients with early stage CKD (invited from 15 different GP practices located across 8 NHS sites and via adverts on websites, support group publications and social media) and with health professionals from 4 CCGs in the southwest of England. Data were digitally recorded, transcribed verbatim and analysed thematically supported by qualitative data analysis software NVivo10.
45 patients (aged 36-94, 25 male) and 19 primary care health professionals (16 GPs, 3 practice nurses) completed an interview. Findings revealed a gap between what health professionals 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.
Some health professionals’ 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.
- Jeremy Horwood, University of Oxford, Oxford, UK
- Julie Evans, University of Manchester, Manchester, UK
- Rosemary Simmonds, University of Oxford, Oxford, UK
- Kristina Bennert, University of Oxford, Oxford, UK
- Tom Blakeman, UCL, London, UK
- Daniel Lasserson, University of Manchester, Manchester, UK
- Louise Locock, University of Manchester, Manchester, UK
- Elizabeth Murray
- Gene Feder, University of Oxford, Oxford, UK