O101
Patient-Reported Symptoms in Early and Pre-Dialysis Chronic Kidney Disease
1
Brown SA, 1Clarke AL, 1Lloyd-Davies LH, 1Hull KL, 2Stein A , 3Tarrant C, 1Burton JO, 1Smith AC
Leicester Kidney Exercise Team, Department of Infection, Immunity and Inflammation, University of
Leicester & John Walls Renal Unit, University Hospitals of Leicester NHS Trust;
2
Department of Renal Medicine, University Hospitals of Coventry and Warwickshire NHS Trust;
3
Department of Health Sciences, University of Leicester
1
Introduction: Chronic Kidney Disease (CKD) is associated with a wide range of debilitating symptoms
which impact on quality of life (QoL). There is increasing appreciation of the importance of patient-reported
outcomes, and a consequent need to validate tools for this purpose, but the early and pre-dialysis CKD
population has been largely overlooked in this regard (Kidney Health: Delivering Excellence Report, October
2013). We have utilised a locally-developed symptom questionnaire (SxQ) originally intended for use in end
stage renal disease, which lists 11 symptoms and asks patients to rate the “frequency” and “intrusiveness” of
each. This SxQ is useful but requires modification to better reflect the symptom range reported by patients
with earlier stages of CKD.
Aims: To explore the patient-reported symptom burden in patients with CKD Stages 1-5 pre-dialysis using
our existing SxQ, and to identify modifications required for this specific patient population.
Methods: The SxQ was amended with the addition of blank rows to allow patients to rate any extra symptoms
not included in the existing list. 200 patients with CKD stages 1-5 predialysis completed the SxQ at routine
outpatient clinic appointments, of which 129 gave consent for researchers to extract additional information
from their clinical records (77 male, age 21-93 years, eGFR 5-59 ml/min/1.73m2 ).
Results: The most commonly reported symptoms were “excessive tiredness” (n=150, 75%), “sleep
disturbance” (n=128, 64%) and “pain in bones/joints” (n=125, 62.5%). When asked to rate how frequently
each symptom occurred on a scale of 0(never) to 4(every day), the same 3 symptoms scored most highly with
mean±SEM frequency ratings of 2.29±0.11, 2.01±0.12 and 1.95±0.12 respectively. Intrusiveness ratings were
also scored from 0(not at all) to 4(extremely). The most intrusive symptoms were “pain in bones/ joints”
(mean score 1.94±0.12), “loss of muscle strength/ power” (1.93±0.12) and “excessive tiredness” (1.92±0.10).
The most commonly reported additional symptoms were “nocturia” and “feeling cold”, and it was notable that
when patients chose to report an additional symptom, both frequency and intrusiveness were rated very
highly.
No significant correlations were found between total symptom burden (the sum of frequency and intrusiveness
scores) and biochemical markers of disease severity, including Urea, eGFR, Creatinine, Albumin,
Haemoglobin levels or Protein-Creatinine Ratio.
Conclusion: These results highlight the symptoms that patients with CKD find most troublesome in their dayto-day lives, which require attention to improve the patient experience. It is interesting to note that the patientreported symptom burden appears unrelated to clinical markers of disease severity, indicating the importance
of including effective patient-reported outcome measures as an integral part of clinical evaluation. This
research informs our ongoing development of a symptom score to aid clinical management and research in the
early and pre-dialysis CKD population.