عدم افشای بیماری مزمن کلیه در مراقبت های اولیه و محدودیت های عقلانیت ابزاری در خودمدیریتی بیماری مزمن

Early detection of long term conditions is predicated on assumptions that lifestyle changes and medications can be used to reduce or manage the risk of condition progression. However, ambiguity remains about the nature and place of diagnostic disclosure to people in newly recognised or asymptomatic ‘pre’ conditions such as early stage chronic kidney disease (CKD). The disclosure of a diagnosis is relevant to instigating strategies which rely on actively engaging patients as self-managers of their own care. Whilst primary care routinely records a diagnosis of early stage CKD, little is known about how patients learn about the fact that they have CKD or how they respond to this. This study aimed to explore patients' experiences of disclosure of CKD in primary care settings. A nested qualitative study of participants recruited to a trial of an intervention for CKD patients in Greater Manchester, UK was undertaken. A purposive sample of 26 patients, with a mean age of 72 years (range 59–89, median 71), were interviewed during 2012. Interview transcripts were analysed using constant comparative techniques. Narrative accounts reflected limited or partial disclosure of CKD; often cast in vague terms as “nothing to worry about”. How patients described themselves in terms of participation and their tendencies towards ‘active’ or ‘passive’ involvement in consultations emerged as important components of narratives around disclosure. The findings illuminate the ways in which diagnosis is oriented in a context where it is possible to meet the requirements for remuneration under a pay for performance system of primary care, whilst apparently not disclosing a label or a diagnosis to patients. This challenges the presumptions inherent in wider health policy objectives that are increasingly built on the notion of responsible patients and the ethos of the active support of self-management for pre-conditions.

Improving population health through early detection of ‘pre-conditions’ has been linked both to the increased effectiveness of secondary prevention and the risks of increased surveillance (Howson, 1998). In the United Kingdom (UK), health policy has incentivised surveillance of early stage chronic kidney disease (CKD) in primary care with the detection, recording on a register and monitoring of CKD constituting remunerated Quality and Outcomes Framework (QOF) indicators (eGuidelines.co.uk, 2014). However, little attention has been paid to the ways in which ‘diagnosis,’ or the recording of pre-conditions, is managed in practice, nor the extent to which disclosure might be considered by (and have implications for) patients. In this article, we explore disclosure through the results of a qualitative study that was nested within a randomised, controlled trial (RCT) of a self-management intervention for early stage CKD (Blickem et al., 2013). The intervention consisted of information about kidney health and telephone-guided access to community support groups and activities. Given that early stage CKD is currently contested in the biomedical literature, it was felt valuable to explore diagnostic awareness within the context of an intervention designed to provide information about, and open up options for, self-management. The aim of the trial intervention was to contribute to the evidence-base for guided self-management, and fits with current notions of patient empowerment and peer support. Here, we explore patient experiences of the disclosure of a CKD diagnosis.

Twenty-six participants in the BRIGHT trial were recruited to the nested qualitative study, with equal numbers taken from the intervention (8 women, 5 men) and control (4 men, 9 women) arms. The interviewees were elderly, with a mean age of 72 years (range 59–89, median 71). These figures were commensurate with those of the 440 total participants to the BRIGHT trial from which the sample of interviewees was drawn (mean 72 years, range 40–90, median 72). The interviews revealed that just over half (15/26) had received a diagnosis of CKD prior to their involvement in the trial, although the specifics of the information disclosed varied considerably (see below). Four people only learnt about the status of their kidneys as a result of being enrolled into the trial and the remaining seven perceived that they had still not been informed that there was anything wrong with their kidneys even in the context of recruitment to the trial.