title: Consumer participation in quality improvements for chronic disease care: development and evaluation of an interactive patient-centered survey to identify preferred service initiatives.
abstract: BACKGROUND
  With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives.
  
  
  OBJECTIVE
  The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score.
  
  
  METHODS
  In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time.
  
  
  RESULTS
  A total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen's kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1%-100.0%. The majority of participants indicated the Web-based survey was easy to complete (97.9%, 531/543) and comprehensive (93.1%, 505/543). Participants also reported the interactive relative prioritization exercise was easy to complete (97.0%, 189/195) and helped them to decide which initiatives were of most importance (84.6%, 165/195). Average completion time was 8.54 minutes (SD 3.91) and the Flesch-Kincaid reading level was 6.8. Overall, 84.6% (447/529) of participants indicated a willingness to complete a similar survey again.
  
  
  CONCLUSIONS
  The Web-based Consumer Preferences Survey is sufficiently reliable and highly acceptable to patients. Based on completion times and reading level, this tool could be integrated in routine clinical practice and allows consumers to easily participate in quality evaluation. Results provide a comprehensive list of patient-prioritized initiatives for patients with major chronic conditions and delivers practice-ready evidence to guide improvements in patient-centered care.
authors.affiliation: Priority Research Centre for Health Behaviour, School of Medicine and Public Health & Hunter Medical Research Institute, University of Newcastle, Callaghan, Australia. elizabeth.fradgley@newcastle.edu.au.
authors.forename: Elizabeth A
authors.identifier: http://orcid.org/0000-0003-3535-2885
authors.initials: EA
authors.lastname: Fradgley
authors.forename: Christine L
authors.identifier: http://orcid.org/0000-0002-0504-5246
authors.initials: CL
authors.lastname: Paul
authors.forename: Jamie
authors.identifier: http://orcid.org/0000-0001-9378-5852
authors.initials: J
authors.lastname: Bryant
authors.forename: Ian A
authors.identifier: http://orcid.org/0000-0002-8296-1555
authors.initials: IA
authors.lastname: Roos
authors.forename: Frans A
authors.identifier: http://orcid.org/0000-0003-2358-5630
authors.initials: FA
authors.lastname: Henskens
authors.forename: David J
authors.identifier: http://orcid.org/0000-0002-2428-5667
authors.initials: DJ
authors.lastname: Paul
mesh_terms: D000293:Adolescent; D000368:Aged; D002908:Chronic Disease / Q000628:therapy*; D003256:Community Participation / Q000379:methods*; D003625:Data Collection; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D018802:Patient-Centered Care / Q000379:methods*; D010865:Pilot Projects; D058996:Quality Improvement; D015203:Reproducibility of Results; D055815:Young Adult
keywords: ambulatory care; cardiology; chronic disease; consumer participation; health care surveys; medical oncology; neurology; patient-centered care