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Initial Evaluation of the Pediatric PROMIS® Health Domains in Children and Adolescents With Sickle Cell Disease

Year: 2016
Type: article
Study design: Observational Study
Abstract: BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS®) has developed pediatric self-report scales measuring several unidimensional health attributes (domains) suitable for use in clinical research, but these measures have not yet been validated in sickle cell disease (SCD). PROCEDURE: A convenience sample of SCD children, aged 8-17 years, from two sickle cell programs was recruited at routine clinic visits, including some for hydroxyurea monitoring or monthly transfusions. Children completed PROMIS pediatric items using an online data collection platform, the PROMIS Assessment Center Web site. RESULTS: A total of 235 participants (mean age 12.5 ± 2.8 years, 49.8% female) participated in the study. Adolescents (ages 12-17 years) reported significantly higher pain interference and depressive symptoms, and worse lower extremity physical functioning domain scores compared to younger children (ages 8-11 years). Female participants reported significantly higher pain interference, fatigue, and depressive symptoms, and worse lower extremity physical functioning domain scores compared with their male counterparts. Participants with hip or joint problems that limited usual activities reported significantly higher pain, fatigue, and depressive symptoms scores, and worse upper/lower extremity physical functioning scores as did participants who had experienced sickle pain in the previous 7 days. CONCLUSIONS: PROMIS pediatric measures are feasible in a research setting and identify expected differences in known group comparisons in a sample of SCD children. The large domain score differences between those with or without SCD-related complications suggest the potential usefulness of these measures in clinical research, but further validation studies are needed, particularly in clinical practice settings.
DOI: 10.1002/pbc.25944
Authors: Carlton Dampier, Vaughn Barry, Heather E. Gross, Yang Lui, Courtney D. Thornburg, Darren A. DeWalt, Bryce B. Reeve
Institutions: Emory University, Children's Healthcare of Atlanta, University of North Carolina at Chapel Hill, University of California, Merced, University of California San Diego, Rady Children's Hospital-San Diego
Language: English
Subfield: Genetics
Field: Medicine
Open Access status: green
Awards: UW Center on Outcomes Research in Rehabilitation(RMI), Pediatric PROMIS: Advancing the Measurement and Conceptualizaiton of Child Health, Development and Validation of a Self-Efficacy Item Bank, Validating and Extending the PROMIS Sexual Function Measure for Clinical Research, G511022183, Development and Initial Validation of PROMIS GI Distress Scale, PROMIS Technical Center, PROS (Patient Reported Outcomes) for Children and Young Adults with Disabilities, Ecological validity in patient-reported chronic disease outcomes(RMI), Improving Assessment of Physical Function and Drug Safety in Health and Disease, Enhancing PROMIS in Pediatric Pain, Rheumatology, and Rehabilitation Research, Validation and domain development in mental health and sleep-wake function, NIH PROMIS Statistical Coordinating Center(RMI), PROMIS Pediatrics: Longitudinal Validation and Linking Pediatric and Adult Item B, Validation of PROMIS in Diverse Cancer Populations, Patient reported outcomes in routine clinical care of patients infected with HIV, Ecological Validity of PROMIS Instruments, Patient-Reported Outcomes Measurement Information System (PROMIS) Network Center, PROMIS Statistical Center
OpenAlex ID: W2276339439
FWCI: 8.465
Cites: 38
Cited by: 93
Related to: 10