Validation of the Sickle Cell Disease Pain Burden Interview-Youth

• Type of Material: Article
• Authors: Willliam T. Zempsky, Connecticut Children's Medical Center; Emily A. O'Hara, Connecticut Children's Medical Center; James P. Santanelli, Connecticut Children's Medical Center; Tonya M. Palermo, University of Washington; Tamara New, Emory University; Kim Smith-Whitley, Children's Hospital of Philadelphia; James F. Casella, Johns Hopkins University
• Language: English
• Date: 2013-09-01
• Publisher: Elsevier: 12 months
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2013 by the American Pain Society.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.jpain.2013.03.007
• Title of Journal or Parent Work: Journal of Pain
• ISSN: 1526-5900
• Volume: 14
• Issue: 9
• Start Page: 975
• End Page: 982
• Grant/Funding Information: This research was made possible through funding from the National Institute of Health (K-23 HL090832); and the Patrick and Catherine Weldon Donaghue Medical Research Foundation.
• Keywords: Life Sciences & Biomedicine; Neurosciences; GENERIC CORE SCALES; Sickle cell disease; HOME MANAGEMENT; functional assessment; adolescents; ACTIVITY LIMITATIONS INTERVIEW; pain; QUALITY-OF-LIFE; INVENTORY; PEDIATRIC PAIN; Clinical Neurology; DAILY DIARY; Science & Technology; Neurosciences & Neurology; ADOLESCENTS; SCHOOL-AGE-CHILDREN; QUESTIONNAIRE
• Research Categories: Health Sciences, Medicine and Surgery

Abstract

The purpose of this study was to develop and validate a brief, clinically relevant, multidimensional interview to assess pain burden among children and adolescents with sickle cell disease (SCD). The Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y) was developed using a panel of experts, patients, and caregivers. Validation was undertaken with children and youth with SCD, ages 7 to 21 years (N = 129), recruited from 4 urban children's hospitals. Participants were recruited from inpatient (n = 62) and outpatient (n = 67) settings. The SCPBI-Y demonstrated strong internal consistency reliability, cross-informant concordance (child-caregiver), and test-retest reliability (outpatient setting). Moderate construct validity was found with validated measures of functional ability, pain, and quality of life. The SCPBI-Y demonstrated construct validity using a contrasted group approach between youth in inpatient versus outpatient settings and by severity of SCD symptoms, suggesting that youth in inpatient settings and with higher disease severity exhibited greater pain burden. Discriminant validity was found between SCPBI-Y and mood. Our preliminary findings suggest that the SCPBI-Y is a valid and reliable multidimensional interview that can be used in different clinical settings to evaluate pain burden among children and adolescents with SCD. Perspective: Multifaceted pain assessments are salient in providing optimal care to children and adolescents with SCD; however, current evaluations are lengthy and cumbersome to administer clinically. The current study introduces and validates a brief, clinically useful multidimensional interview to evaluate pain burden specific to youth with SCD.