title: Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice.
abstract: Patient-reported outcomes (PROs) can promote patient-centered care, but previous research has documented interpretation challenges among clinicians and patients. We engaged stakeholders to improve formats for presenting individual-level PRO data (for patient monitoring) and group-level PRO data (for reporting comparative clinical studies).
  
  
  
  In an iterative process, investigators partnered with stakeholder workgroups of clinicians and patients to address previously identified interpretation challenges. Candidate approaches were then tested in semi-structured, one-on-one interviews with cancer patients and clinicians. Interpretation issues addressed included conveying score meaning (i.e., what is good/bad) and directional inconsistency (whether higher scores are better/worse). An additional issue for individual-level PROs was highlighting potentially concerning scores and, for group-level PROs, identifying important between-group differences (clinical, statistical).
  
  
  
  One-on-one interviews in a purposive sample of clinicians (n = 40) and patients (n = 39) provided insights regarding approaches to address issues identified. For example, adding descriptive labels to the Y-axis (none, mild, moderate, severe) helps address directional inconsistency and aids interpretation of score meaning. Red circles around concerning data points or a threshold line indicating worse-than-normal scores indicate possibly concerning scores for individual-level PRO data. For group-level PRO data, patients and some clinicians are confused by confidence limits and clinical versus statistical significance, but almost all clinicians want p values displayed.
  
  
  
  Variations in interpretation accuracy demonstrate the importance of presenting PRO data in ways that promote understanding and use. In an iterative stakeholder-driven process, we developed improved PRO data presentation formats, which will be evaluated in further research across a large population of patients and clinicians.
authors.affiliation: Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Rm 726, Baltimore, MD, USA. katecsmith@jhu.edu.|Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA. katecsmith@jhu.edu.
authors.forename: Katherine C
authors.initials: KC
authors.lastname: Smith
authors.affiliation: Queen's Cancer Research Institute, Queen's University, Kingston, ON, Canada.
authors.forename: Michael D
authors.initials: MD
authors.lastname: Brundage
authors.affiliation: Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA.
authors.forename: Elliott
authors.initials: E
authors.lastname: Tolbert
authors.affiliation: Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA.
authors.forename: Emily A
authors.initials: EA
authors.lastname: Little
authors.affiliation: Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA.
authors.forename: Elissa T
authors.initials: ET
authors.lastname: Bantug
authors.affiliation: Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA.|Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA.
authors.forename: Claire F
authors.initials: CF
authors.lastname: Snyder
mesh_terms: D000328:Adult; D000368:Aged; D003142:Communication; D006801:Humans; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D018802:Patient-Centered Care / Q000379:methods*
keywords: Cancer; Communication; Mixed methods; Oncology; Patient-reported outcomes; Stakeholder engagement