title: Development and validation of a new patient experience tool in patients with serious illness.
abstract: BACKGROUND
  Patients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings.
  
  
  METHODS
  We developed a new tool designed to address these gaps. The 25 item scale was tested and refined using randomly cross-validated exploratory and confirmatory factor analyses. Participants were not yet hospice eligible but sick enough to receive benefits of a supportive care approach in the last 2 to 3 years of life. Full information maximum likelihood models were run to confirm the factor structure developed in exploratory analyses. Goodness-of-fit was assessed with the Comparative Fit Index, the Tucker-Lewis Index, and the Root Mean Square Error of Approximation. Test-retest reliability was assessed with the intraclass correlation coefficient and internal consistency of the final scale was examined using Cronbach's alpha.
  
  
  RESULTS
  Exploratory factor analysis revealed three domains - Care Team, Communication, and Care Goals - after removing weak loading and cross loading items. The initial three domain measurement model suggested in the development cohort was tested in the validation cohort and exhibited poor fit X2(206) = 565.37, p < 0.001; CFI = 0.879; TLI = 0.864; RMSEA = 0.076. After model respecification, including removing one additional item and allowing paths between theoretically plausible error terms, the final 21 item tool exhibited good fit X2(173) = 295.63, p < 0.001; CFI = 0.958; TLI = 0.949; RMSEA = 0.048. Cronbach's alpha revealed high reliability of each domain (Care Team = 0.92, Communication = 0.83, Care Goals = 0.77) and the entire scale (α = 0.91). ICC showed adequate test-retest validity (ICC = 0.58; 95% CI: 0.52-0.65) of the full scale.
  
  
  CONCLUSIONS
  When administered earlier in the chronic illness trajectory, a new patient experience scale focused on care teams across settings, communication, and care goals, displayed strong reliability and performed well psychometrically.
  
  
  BACKGROUND
  This trial ( NCT01746446 ) was registered at ClinicalTrials.gov on November 27, 2012 (retrospectively registered).
authors.affiliation: Division of Applied Research, Allina Health, 2925 Chicago Avenue, Mail Stop #10039, Minneapolis, MN, 55407, USA. karl.fernstrom@allina.com.
authors.forename: Karl M
authors.initials: KM
authors.lastname: Fernstrom
authors.affiliation: Division of Health Policy and Management, University of Minnesota School of Public Health, 420 Delaware St. SE, D375 Mayo MMC 729, Minneapolis, MN, 55455, USA.
authors.forename: Nathan D
authors.initials: ND
authors.lastname: Shippee
authors.affiliation: Division of Applied Research, Allina Health, 2925 Chicago Avenue, Mail Stop #10039, Minneapolis, MN, 55407, USA.
authors.forename: Alissa L
authors.initials: AL
authors.lastname: Jones
authors.affiliation: Division of Applied Research, Allina Health, 2925 Chicago Avenue, Mail Stop #10039, Minneapolis, MN, 55407, USA.
authors.forename: Heather R
authors.initials: HR
authors.lastname: Britt
mesh_terms: D000368:Aged; D002908:Chronic Disease; D003695:Delivery of Health Care / Q000592:standards; D003704:Dementia / Q000523:psychology / Q000628:therapy*; D005260:Female; D006333:Heart Failure / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008297:Male; D008910:Minnesota; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010347:Patient Care Planning; D010348:Patient Care Team / Q000592:standards; D000070659:Patient Comfort / Q000592:standards; D017060:Patient Satisfaction; D011369:Professional-Patient Relations; D011594:Psychometrics; D019984:Quality Indicators, Health Care / Q000592:standards*; D011795:Surveys and Questionnaires / Q000592:standards; D014922:Wisconsin
keywords: Chronic disease; Health care surveys; Patient experience; Patient-centered care; Patient-reported outcome measures