Katherine C Smith1,2, Michael D Brundage3, Elliott Tolbert4, Emily A Little4, Elissa T Bantug5, Claire F Snyder4,5. 1. Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Rm 726, Baltimore, MD, USA. katecsmith@jhu.edu. 2. Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA. katecsmith@jhu.edu. 3. Queen's Cancer Research Institute, Queen's University, Kingston, ON, Canada. 4. Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA. 5. Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA.
Abstract
PURPOSE: 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). METHODS: 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). RESULTS: 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. CONCLUSIONS: 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.
PURPOSE: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). METHODS: 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 cancerpatients 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). RESULTS: 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. CONCLUSIONS: 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: Claire F Snyder; Amanda L Blackford; Antonio C Wolff; Michael A Carducci; Joseph M Herman; Albert W Wu Journal: Psychooncology Date: 2012-04-30 Impact factor: 3.894
Authors: Michael D Brundage; Katherine C Smith; Emily A Little; Elissa T Bantug; Claire F Snyder Journal: Qual Life Res Date: 2015-05-27 Impact factor: 4.147
Authors: N K Aaronson; S Ahmedzai; B Bergman; M Bullinger; A Cull; N J Duez; A Filiberti; H Flechtner; S B Fleishman; J C de Haes Journal: J Natl Cancer Inst Date: 1993-03-03 Impact factor: 13.506
Authors: Galina Velikova; Laura Booth; Adam B Smith; Paul M Brown; Pamela Lynch; Julia M Brown; Peter J Selby Journal: J Clin Oncol Date: 2004-02-15 Impact factor: 44.544
Authors: Catherine Acquadro; Rick Berzon; Dominique Dubois; Nancy Kline Leidy; Patrick Marquis; Dennis Revicki; Margaret Rothman Journal: Value Health Date: 2003 Sep-Oct Impact factor: 5.725
Authors: Margaret M Lubas; Yan Lu; Aaron W Gehr; Bassam Ghabach; Bhavna Tanna; Kalyani Narra; Tara M Brinkman; Rohit P Ojha Journal: Cancer Epidemiol Biomarkers Prev Date: 2019-11-18 Impact factor: 4.254
Authors: Elliott Tolbert; Michael Brundage; Elissa Bantug; Amanda L Blackford; Katherine Smith; Claire Snyder Journal: Qual Life Res Date: 2018-11-29 Impact factor: 4.147
Authors: Talya Salz; Rebecca B Schnall; Mary S McCabe; Kevin C Oeffinger; Stacie Corcoran; Andrew J Vickers; Andrew L Salner; Ellen Dornelas; Nirupa J Raghunathan; Elizabeth Fortier; Janet McKiernan; David J Finitsis; Susan Chimonas; Shrujal Baxi Journal: JCO Clin Cancer Inform Date: 2018-12
Authors: Meghan Reading Turchioe; Lisa V Grossman; Annie C Myers; Dawon Baik; Parag Goyal; Ruth M Masterson Creber Journal: J Am Med Inform Assoc Date: 2020-05-01 Impact factor: 4.497
Authors: Claire Snyder; Katherine Smith; Bernhard Holzner; Yonaira M Rivera; Elissa Bantug; Michael Brundage Journal: Qual Life Res Date: 2018-10-10 Impact factor: 4.147
Authors: Maud M van Muilekom; Michiel A J Luijten; Hedy A van Oers; Caroline B Terwee; Raphaële R L van Litsenburg; Leo D Roorda; Martha A Grootenhuis; Lotte Haverman Journal: J Patient Rep Outcomes Date: 2021-07-10