title: Trajectories of illness in stage 5 chronic kidney disease: a longitudinal study of patient symptoms and concerns in the last year of life.
abstract: OBJECTIVE
  The illness trajectory in the last year of life in advanced (stage 5) chronic kidney disease is poorly understood. Mapping the trajectory of patient-centered outcomes could facilitate better care. The objectives of this study were to determine trajectories of symptoms and wider health-related concerns in the last year of life in stage 5 chronic kidney disease, managed without dialysis.
  
  
  METHODS
  A longitudinal symptom survey in three UK renal units was used, using the Memorial Symptom Assessment Scale-Short Form and core Palliative Care Outcome Scale. Average (using mean scores over time) and individual (using individual scores over time, with visual graphical analysis) trajectories were mapped.
  
  
  RESULTS
  Seventy-four patients (mean age, 81 ± 6.8 years) were recruited; 49 died during follow-up. Average trajectories showed moderate symptom distress and health-related concerns, with marked increase in the last 2 months of life. Visual graphical analysis enabled stable, increasing, or fluctuant individual trajectories to be identified. The proportion following these trajectories varied between outcome measures; regarding symptoms, 50% followed a stable pattern, 24% increased, and 21% fluctuated compared with 26%, 57%, and 21%, respectively, for health-related concerns. Inter-rater agreement in grouping trajectories was high (κ statistic, 0.80 and 0.86, respectively).
  
  
  CONCLUSIONS
  In the 2 months before death, patients reported a sharp increase in symptom distress and health-related concerns. Health care should anticipate and address this increase, which may indicate the patients is approaching death. Considerable individual variation and flexibility/responsiveness of care is important: one size of service does not fit all.
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, King's College London, London, UK. fliss.murtagh@kcl.ac.uk
authors.forename: Fliss E M
authors.initials: FE
authors.lastname: Murtagh
authors.forename: Neil S
authors.initials: NS
authors.lastname: Sheerin
authors.forename: Julia
authors.initials: J
authors.lastname: Addington-Hall
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D002908:Chronic Disease; D017281:Cost of Illness; D003695:Delivery of Health Care; D018450:Disease Progression; D004739:England; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007674:Kidney Diseases / Q000150:complications / Q000175:diagnosis / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D008137:Longitudinal Studies; D008297:Male; D010166:Palliative Care; D011379:Prognosis; D011446:Prospective Studies; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013727:Terminal Care; D013997:Time Factors