John M Costello1, Kathleen Mussatto2, Amy Cassedy3, Jo Wray4, Lynn Mahony5, Sarah A Teele6, Kate L Brown4, Rodney C Franklin7, Gil Wernovsky8, Bradley S Marino9. 1. Divisions of Cardiology and Critical Care Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago and Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL. Electronic address: jmcostello@luriechildrens.org. 2. Department of Surgery, Children's Hospital of Wisconsin, Milwaukee, WI. 3. Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. 4. Critical Care and Cardiorespiratory Department, Great Ormond Street Hospital for Children National Health Service Trust, Royal Brompton and Harefield National Health Service Foundation Trust, London, United Kingdom. 5. Department of Pediatrics, Children's Medical Center of Dallas, University of Texas Southwestern Medical Center, Dallas, TX. 6. Department of Cardiology, Division of Cardiovascular Critical Care, Boston Children's Hospital and Department of Pediatrics, Harvard Medical School, Boston, MA. 7. Division of Pediatric Cardiology, Royal Brompton and Harefield National Health Service Trust, National Heart and Lung Institute, Imperial College London, London, United Kingdom. 8. The Heart Program, Miami Children's Health System, Department of Pediatrics, Florida International University Herbert Wertheim College of Medicine, Miami, FL. 9. Divisions of Cardiology and Critical Care Medicine, Cinncinnati Children's Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH.
Abstract
OBJECTIVE: To determine whether clinicians could reliably predict health-related quality of life (HRQOL) for children with cardiac disease, the level of agreement in predicted HRQOL scores between clinician sub-types, and agreement between clinician-predicted HRQOL scores and patient and parent-proxy reported HRQOL scores. STUDY DESIGN: In this multicenter, cross-sectional study, a random sample of clinical summaries of children with cardiac disease and related patient and parent-proxy reported HRQOL scores were extracted from the Pediatric Cardiac Quality of Life Inventory data registry. We asked clinicians to review each clinical summary and predict HRQOL. RESULTS: Experienced pediatric cardiac clinicians (n = 140), including intensive care physicians, outpatient cardiologists, and intensive care, outpatient, and advanced practice nurses, each predicted HRQOL for the same 21 pediatric cardiac patients. Reliability within clinician subspecialty groups for predicting HRQOL was poor (intraclass correlation coefficients, 0.34-0.38). Agreement between clinician groups was low (Pearson correlation coefficients, 0.10-0.29). When comparing the average clinician predicted HRQOL scores to those reported by patients and parent-proxies by Bland Altman plots, little systematic bias was present, but substantial variability existed. Proportional bias was found, in that clinicians tended to overestimate HRQOL for those patients and parent-proxies who reported lower HRQOL, and underestimate HRQOL for those reporting higher HRQOL. CONCLUSIONS: Clinicians perform poorly when asked to predict HRQOL for children with cardiac disease. Clinicians should be cognizant of these data when providing counseling. Incorporating reported HRQOL into clinical assessment may help guide individualized treatment decision-making.
OBJECTIVE: To determine whether clinicians could reliably predict health-related quality of life (HRQOL) for children with cardiac disease, the level of agreement in predicted HRQOL scores between clinician sub-types, and agreement between clinician-predicted HRQOL scores and patient and parent-proxy reported HRQOL scores. STUDY DESIGN: In this multicenter, cross-sectional study, a random sample of clinical summaries of children with cardiac disease and related patient and parent-proxy reported HRQOL scores were extracted from the Pediatric Cardiac Quality of Life Inventory data registry. We asked clinicians to review each clinical summary and predict HRQOL. RESULTS: Experienced pediatric cardiac clinicians (n = 140), including intensive care physicians, outpatient cardiologists, and intensive care, outpatient, and advanced practice nurses, each predicted HRQOL for the same 21 pediatric cardiac patients. Reliability within clinician subspecialty groups for predicting HRQOL was poor (intraclass correlation coefficients, 0.34-0.38). Agreement between clinician groups was low (Pearson correlation coefficients, 0.10-0.29). When comparing the average clinician predicted HRQOL scores to those reported by patients and parent-proxies by Bland Altman plots, little systematic bias was present, but substantial variability existed. Proportional bias was found, in that clinicians tended to overestimate HRQOL for those patients and parent-proxies who reported lower HRQOL, and underestimate HRQOL for those reporting higher HRQOL. CONCLUSIONS: Clinicians perform poorly when asked to predict HRQOL for children with cardiac disease. Clinicians should be cognizant of these data when providing counseling. Incorporating reported HRQOL into clinical assessment may help guide individualized treatment decision-making.
Authors: Bradley S Marino; Dennis Drotar; Amy Cassedy; Richard Davis; Ryan S Tomlinson; Katelyn Mellion; Kathleen Mussatto; Lynn Mahony; Jane W Newburger; Elizabeth Tong; Mitchell I Cohen; Mark A Helfaer; Anne E Kazak; Jo Wray; Gil Wernovsky; Judy A Shea; Richard Ittenbach Journal: Qual Life Res Date: 2010-12-25 Impact factor: 4.147
Authors: John M Costello; Molly O'Brien; David Wypij; Joana Shubert; Joshua W Salvin; Jane W Newburger; Peter C Laussen; John H Arnold; Francis Fynn-Thompson; Ravi R Thiagarajan Journal: Pediatr Crit Care Med Date: 2012-07 Impact factor: 3.624
Authors: Gonzalo Garcia Guerra; Charlene M T Robertson; Gwen Y Alton; Ari R Joffe; Irina A Dinu; David Nicholas; David B Ross; Ivan M Rebeyka Journal: J Thorac Cardiovasc Surg Date: 2012-04-14 Impact factor: 5.209
Authors: Bradley S Marino; Ryan S Tomlinson; Gil Wernovsky; Dennis Drotar; Jane W Newburger; Lynn Mahony; Kathleen Mussatto; Elizabeth Tong; Mitchell Cohen; Charlotte Andersen; David Shera; Philip R Khoury; Jo Wray; J William Gaynor; Mark A Helfaer; Anne E Kazak; Judy A Shea Journal: Pediatrics Date: 2010-08-30 Impact factor: 7.124
Authors: Bradley S Marino; David Shera; Gil Wernovsky; Ryan S Tomlinson; Abigail Aguirre; Maureen Gallagher; Angela Lee; Catherine J Cho; Whitney Stern; Lauren Davis; Elizabeth Tong; David Teitel; Kathleen Mussatto; Nancy Ghanayem; Marie Gleason; J William Gaynor; Jo Wray; Mark A Helfaer; Judy A Shea Journal: Qual Life Res Date: 2008-05 Impact factor: 4.147
Authors: Karen Uzark; Eileen King; Robert Spicer; Robert Beekman; Thomas Kimball; James W Varni Journal: Congenit Heart Dis Date: 2012-09-12 Impact factor: 2.007
Authors: Richard J Czosek; William J Bonney; Amy Cassedy; Douglas Y Mah; Ronn E Tanel; Jason R Imundo; Anoop K Singh; Mitchell I Cohen; Christina Y Miyake; Kara Fawley; Bradley S Marino Journal: Circ Arrhythm Electrophysiol Date: 2012-12-04
Authors: Linda M Lambert; L LuAnn Minich; Jane W Newburger; Minmin Lu; Victoria L Pemberton; Ellen A McGrath; Andrew M Atz; Mingfen Xu; Elizabeth Radojewski; Darlene Servedio; Brian W McCrindle Journal: Pediatrics Date: 2009-10-19 Impact factor: 7.124
Authors: Emily Morell; Mary Katherine Miller; Minmin Lu; Kevin G Friedman; Roger E Breitbart; Jeffrey R Reichman; Julie McDermott; Lynn A Sleeper; Elizabeth D Blume Journal: J Am Heart Assoc Date: 2021-01-14 Impact factor: 5.501