"Something bubbling in my blood": the experience of advanced chronic kidney disease as a hidden illness (Abstract)

Research output: Contribution to journalPoster abstractpeer-review


Aim: To explore the illness experience of patients with advanced
chronic kidney disease (CKD) managed conservatively, including how
this experience relates to their symptom trajectory approaching end of
life. Methods: A mixed methods study, in which in-depth patient
interviews to explore perspectives on symptom and illness experience,
including changes over time, were conducted alongside a longitudinal
symptom survey. Study population: Patients with Stage 5
CKD managed conservatively (without dialysis). Analysis: Thematic
content analysis, with findings interpreted in the context of the parallel
longitudinal symptom survey. Results: Twenty
purposively-selected (by age, co-morbidity score and performance
status) participants (median age 80 yrs, 11 men, mean estimated
GFR 12.3mL/min, and Karnofsky Performance Score between
40-70%) were recruited. They were following diverse symptom trajectories,
with 6 ‘stable’, 5 ‘increasing’, 6 ‘fluctuant’, and 3
‘unknown’ trajectories. Their experience of the illness highlighted
the major impact of symptoms for these patients, considerable affective
consequences from the illness, and impact over time that
reflected their symptom trajectories. Those following ‘fluctuant’ trajectories
reported disproportionately greatest impact from the illness
on their lives, and the challenges of living with unpredictability were
considerable. Several participants reported the ‘hidden’ and unseen
nature of chronic kidney disease as compared with other conditions,
with a lack of form or identity to grasp themselves or by which their
family and others could understand. Conclusion: There is considerable
diversity and specific characteristics of the illness experience for
these patients. Nephrology and palliative care services need to
1. recognize the often ‘hidden’ nature of CKD and help patients/
families address this, and
2. for those following a fluctuant symptom trajectory, support
patients/families in living with unpredictability.
Original languageEnglish
Article number541
Pages (from-to)S176-S176
Number of pages1
JournalPalliative Medicine
Issue number4 (Supplement 1)
Publication statusPublished - Jun 2010


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