title: Understanding symptoms in patients with advanced chronic kidney disease managed without dialysis: use of a short patient-completed assessment tool.
abstract: BACKGROUND
  It is often believed that patients with advanced chronic kidney disease (CKD) stage 4-5 have few symptoms, and that dying with renal disease is relatively symptom-free. But the symptom burden of patients managed conservatively (without dialysis), with potentially high levels of comorbidity and poor functional status, is unknown. This clinical audit evaluated the prevalence and severity of symptoms in conservatively managed CKD stage 4-5 patients.
  
  
  METHODS
  Symptom data was collected from all conservatively managed patients from 2 renal units referred to a new renal palliative care service over a 10-month period between April 2005 and January 2006. Data on symptom prevalence and severity was collected as part of their routine clinical care, using a modified version of the Patient Outcome Scale--symptom module (POSs). This patient-completed instrument identifies the presence and severity of 17 symptoms. Demographic data was also collected, including estimated glomerular filtration rate (eGFR) using the MDRD formula, primary renal diagnosis and comorbidity.
  
  
  RESULTS
  Symptoms were evaluated in 55 patients, with a mean age of 82 years (SD 5.5, range 66-96). eGFR ranged from 3 to 30 ml/min (median 11, mean 12.75). In patients with CKD stage 4-5, managed without dialysis, the symptom burden is high. The most prevalent symptoms reported were weakness (75%), poor mobility (75%), poor appetite (58%), pain (56%), pruritus (56%) and dyspnoea (49%). The total number of symptoms each individual patient experienced ranged from 1 to 14 (median 7, mean 6.8). Symptoms were frequently reported as moderate, severe, or overwhelming; in 54% of patients with poor mobility, 48% with weakness, 30% with itching, 31% with anorexia and 27% with pain. No significant association was demonstrated between the number of symptoms experienced and either severity of renal disease or comorbidity score.
  
  
  CONCLUSIONS
  This structured clinical evaluation demonstrates the extent and severity of symptom burden in conservatively managed patients with CKD stage 4-5, and demonstrates the use of an appropriate clinical tool that can be used to assess the efficacy of treatment.
authors.affiliation: Florence Nightingale School of Nursing and Midwifery, King's College London, London, UK. emma.murphy@gstt.nhs.uk
authors.forename: Emma L
authors.initials: EL
authors.lastname: Murphy
authors.forename: Fliss E M
authors.initials: FE
authors.lastname: Murtagh
authors.forename: Irene
authors.initials: I
authors.lastname: Carey
authors.forename: Neil S
authors.initials: NS
authors.lastname: Sheerin
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000855:Anorexia / Q000453:epidemiology / Q000209:etiology; D002908:Chronic Disease; D015897:Comorbidity; D004417:Dyspnea / Q000453:epidemiology / Q000209:etiology; D005221:Fatigue / Q000453:epidemiology / Q000209:etiology; D005260:Female; D006801:Humans; D007674:Kidney Diseases / Q000150:complications* / Q000628:therapy; D008297:Male; D010146:Pain / Q000453:epidemiology / Q000209:etiology; D010166:Palliative Care; D015995:Prevalence; D011537:Pruritus / Q000453:epidemiology / Q000209:etiology; D012647:Self-Assessment; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology