Prediction by clinicians of quality of life for children and adolescents with cardiac disease.
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.


METHODS
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.
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.
John M
JM
Costello
Department of Surgery, Children's Hospital of Wisconsin, Milwaukee, WI.
Kathleen
K
Mussatto
Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
Amy
A
Cassedy
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.
Jo
J
Wray
Department of Pediatrics, Children's Medical Center of Dallas, University of Texas Southwestern Medical Center, Dallas, TX.
Lynn
L
Mahony
Department of Cardiology, Division of Cardiovascular Critical Care, Boston Children's Hospital and Department of Pediatrics, Harvard Medical School, Boston, MA.
Sarah A
SA
Teele
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.
Kate L
KL
Brown
Division of Pediatric Cardiology, Royal Brompton and Harefield National Health Service Trust, National Heart and Lung Institute, Imperial College London, London, United Kingdom.
Rodney C
RC
Franklin
The Heart Program, Miami Children's Health System, Department of Pediatrics, Florida International University Herbert Wertheim College of Medicine, Miami, FL.
Gil
G
Wernovsky
Divisions of Cardiology and Critical Care Medicine, Cinncinnati Children's Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH.
Bradley S
BS
Marino
D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006331:Heart Diseases / Q000523:psychology*; D006801:Humans; D008297:Male; D019727:Proxy / Q000523:psychology*; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires