title: Validation of the sickle cell disease pain burden interview-youth.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Pain and Palliative Medicine, Department of Pediatrics, Connecticut Children's Medical Center, Hartford, Connecticut 06106, USA. wzempsk@ccmckids.org
authors.forename: William T
authors.initials: WT
authors.lastname: Zempsky
authors.forename: Emily A
authors.initials: EA
authors.lastname: O'Hara
authors.forename: James P
authors.initials: JP
authors.lastname: Santanelli
authors.forename: Tonya M
authors.initials: TM
authors.lastname: Palermo
authors.forename: Tamara
authors.initials: T
authors.lastname: New
authors.forename: Kim
authors.initials: K
authors.lastname: Smith-Whitley
authors.forename: James F
authors.initials: JF
authors.lastname: Casella
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000150:complications / Q000191:economics*; D002648:Child; D017281:Cost of Illness; D005260:Female; D006801:Humans; D007406:Interview, Psychological / Q000379:methods*; D008297:Male; D010146:Pain / Q000150:complications / Q000191:economics*; D059408:Pain Management; D015203:Reproducibility of Results; D055815:Young Adult
keywords: Sickle cell disease; adolescents; functional assessment; pain