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.
Key words
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Article info
Publication history
Published online: May 22, 2013
Accepted:
March 26,
2013
Received in revised form:
March 8,
2013
Received:
September 10,
2012
Footnotes
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.
There are no conflicts of interest associated with any of the authors.
Identification
Copyright
© 2013 American Pain Society. Published by Elsevier Inc. All rights reserved.
