title: Patient-Reported Outcome Instruments for Physical Symptoms Among Patients Receiving Maintenance Dialysis: A Systematic Review.
abstract: BACKGROUND
  Patients with end-stage renal disease (ESRD) receiving dialysis have poor health-related quality of life. Physical symptoms are highly prevalent among dialysis-dependent patients and play important roles in health-related quality of life. A range of symptom assessment tools have been used in dialysis-dependent patients, but there has been no previous systematic assessment of the existing symptom measures' content, validity, and reliability.
  
  
  METHODS
  Systematic review of the literature.
  
  
  METHODS
  Patients with ESRD on maintenance dialysis therapy.
  
  
  METHODS
  Instruments with 3 or more physical symptoms previously used in dialysis-dependent patients and evidence of validity or reliability testing.
  
  
  METHODS
  Patient-reported physical symptom assessment instrument.
  
  
  RESULTS
  Instrument symptom-related content, validity, and reliability.
  
  
  RESULTS
  From 3,148 screened abstracts, 89 full-text articles were eligible for review. After article exclusion and further article identification by reference reviews, 58 articles on 23 symptom assessment instruments with documented reliability or validity testing were identified. Of the assessment instruments, 43.5% were generic and 56.5% were ESRD specific. Symptoms most frequently assessed were fatigue, shortness of breath, insomnia, nausea and vomiting, and appetite. Instruments varied widely in respondent time burden, recall period, and symptom attributes. Few instruments considered recall periods less than 2 weeks and few assessed a range of symptom attributes. Psychometric testing was completed for congruent validity (70%), known-group validity (25%), responsiveness (30%), internal consistency (78%), and test-retest reliability (65%). Content validity was assessed in dialysis populations in 57% of the 23 instruments.
  
  
  CONCLUSIONS
  Consideration of physical symptoms only and exclusion of single symptom-focused instruments.
  
  
  CONCLUSIONS
  The number of available instruments focused exclusively on physical symptoms in dialysis patients is limited. Few symptom-containing instruments have short recall periods, assess diverse symptom attributes, and have undergone comprehensive psychometric testing. Improved symptom-focused assessment tools are needed to improve symptom evaluation and symptom responsiveness to intervention among dialysis-dependent patients.
authors.affiliation: University of North Carolina Kidney Center, Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC; The Cecil G. Sheps Center for Health Services Research, Chapel Hill, NC. Electronic address: jflythe@med.unc.edu.
authors.forename: Jennifer E
authors.initials: JE
authors.lastname: Flythe
authors.affiliation: University of North Carolina Kidney Center, Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC.
authors.forename: Jill D
authors.initials: JD
authors.lastname: Powell
authors.affiliation: University of North Carolina Kidney Center, Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC.
authors.forename: Caroline J
authors.initials: CJ
authors.lastname: Poulton
authors.affiliation: University of North Carolina Kidney Center, Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC.
authors.forename: Katherine D
authors.initials: KD
authors.lastname: Westreich
authors.affiliation: Health Sciences Library, University of North Carolina, Chapel Hill, NC.
authors.forename: Lara
authors.initials: L
authors.lastname: Handler
authors.affiliation: The Cecil G. Sheps Center for Health Services Research, Chapel Hill, NC; Department of Health Policy and Management, University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC.
authors.forename: Bryce B
authors.initials: BB
authors.lastname: Reeve
authors.affiliation: The Cecil G. Sheps Center for Health Services Research, Chapel Hill, NC; Division of General Internal Medicine and Clinical Epidemiology, Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, NC.
authors.forename: Timothy S
authors.initials: TS
authors.lastname: Carey
mesh_terms: D006801:Humans; D007676:Kidney Failure, Chronic / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy*; D063868:Patient Outcome Assessment; D011788:Quality of Life / Q000523:psychology*; D006435:Renal Dialysis / Q000009:adverse effects / Q000523:psychology*; D057566:Self Report
keywords: Maintenance dialysis; comorbidity burden; end-stage renal disease (ESRD); fatigue; health-related quality of life (HRQoL); insomnia; nausea; patient-centered care; patient-reported outcome instrument; patient-reported symptom tool; physical symptoms; poor appetite; shortness of breath; systematic review