Patients' Experiences After CKD Diagnosis: A Meta-ethnographic Study and Systematic Review

Am J Kidney Dis. 2017 Nov;70(5):656-665. doi: 10.1053/j.ajkd.2017.05.019. Epub 2017 Jul 29.


Background: Chronic kidney disease (CKD) is often asymptomatic at first diagnosis, and awareness of CKD is low in the general population. Thus, individuals who are unexpectedly identified as having CKD may struggle to adjust to living with this diagnosis. This study aims to synthesize qualitative research exploring patients' views and experiences of a CKD diagnosis and how they adjust to it.

Study design: Systematic review and meta-ethnography.

Setting & population: Adult patients with CKD stages 1 to 5.

Search strategy & sources: MEDLINE, PsycINFO, CINAHL, Embase, and Web of Science were searched from the earliest date available to November 2015. Qualitative studies were selected that explored patients' views and experiences of a CKD diagnosis and their adjustment.

Analytical approach: Meta-ethnography was adopted to synthesize the findings.

Results: 10 studies involving 596 patients with CKD from secondary-care settings were included. 7 key themes were identified: a challenging diagnosis, diverse beliefs about causation, anticipated concerns about progression, delaying disease progression, unmet informational needs, psychosocial impact of CKD, and adjustment to life with CKD.

Limitations: Limited to views and experiences of participants in included studies, which were mostly conducted in high-income countries. Studies not written in English were excluded. Transferability of findings to other populations may be limited.

Conclusions: This review highlights variation in patients' understanding of CKD, an overall lack of information on the trajectory of CKD, and a need for psychosocial support, especially in later stages, to help patients adjust to living with CKD. Future research that acknowledges CKD as a condition with diverse complicating morbidities and explores how patients' information and psychosocial needs vary according to severity and comorbid conditions would be beneficial. This will support delivery of easily understandable, timely, and targeted information about CKD, as well as practical advice about recommended lifestyle changes.

Keywords: CKD diagnosis; CKD progression; Chronic kidney disease (CKD); end-stage renal disease (ESRD); meta-ethnography; patient education; patient experience; psychosocial support; qualitative study; self-management.

Publication types

  • Review
  • Systematic Review

MeSH terms

  • Adaptation, Psychological*
  • Anthropology, Cultural
  • Disease Progression
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Needs Assessment
  • Patient Education as Topic*
  • Qualitative Research
  • Renal Insufficiency, Chronic / diagnosis
  • Renal Insufficiency, Chronic / psychology*
  • Severity of Illness Index
  • Social Support*