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.
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.
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- Pain management of sickle cell disease.Hematol Oncol Clin North Am. 2005; 19: 785-802
- Correlates of pain-rating concordance for adolescents with sickle cell disease and their caregivers.Clin J Pain. 2008; 24: 438-446
- Vaso-occlusive painful events in sickle cell disease: Impact on child well-being.Pediatr Blood Cancer. 2010; 54: 92-97
- Evidence-based assessment of pediatric pain.J Pediatr Psychol. 2008; 33: 939-955
- Pain intensity and home pain management of children with sickle cell disease.Issues Compr Pediatr Nurs. 1996; 19: 183-195
- Home management of pain in sickle cell disease: A daily diary study in children and adolescents.J Pediatr Hematol Oncol. 2002; 24: 643-647
- Physical and cognitive-behavioral activities used in the home management of sickle pain: A daily diary study in children and adolescents.Pediatr Blood Cancer. 2004; 43: 674-678
- Development and evaluation of a sickle cell assessment instrument.Pediatr Nurs. 2004; 30: 451-458
- The impact of chronic pain on adolescents: A review of previously used measures.J Pediatr Psychol. 2006; l31: 684-697
- The Bath Adolescent Pain Questionnaire (BAPQ): Development and preliminary psychometric evaluation of an instrument to assess the impact of chronic pain on adolescents.Pain. 2005; 118: 263-270
- Caregiver report of pain in infants and toddlers with sickle cell disease: Reliability and validity of a daily diary.J Pain. 2002; 3: 50-57
- Pain, quality of life, and coping in sickle cell disease.Arch Dis Child. 1996; 75: 199-203
- Daily stress and mood and their association with pain: Health care use and school activity in adolescents with sickle cell disease.J Pediatr Psychol. 2003; 28: 363-373
- Pain in children and adolescents with sickle cell disease: An analysis of daily pain diaries.Child Health Care. 2000; 29: 225-241
- Pain, fatigue, and health-related quality of life in children and adolescents with chronic pain.Clin J Pain. 2009; 25: 407-412
- Multidimensional assessment of pain in pediatric sickle cell disease.J Pediatr Psychol. 2001; 26: 203-214
- PedMIDAS: Development of a questionnaire to assess disability of migraines in children.Neurology. 2001; 57: 2034-2039
- A measure of positive and negative affect for children: Scale development and preliminary validation.Psychol Assess. 1999; 11: 326-338
- Sleep disturbances in school-age children with chronic pain.J Pediatr Psychol. 2008; 33: 258-268
- Children's and adolescents' use of diaries for sickle cell pain.J Soc Pediatr Nurs. 2001; 6: 161-169
- Validity of the Pediatric Quality of Life Inventory for youth with sickle cell disease.J Pediatr Psychol. 2008; 33: 1153-1162
- Consensus statement: Core outcomes domains and measures for pediatric acute and chronic/recurrent pain clinical trials: PedIMMPACT recommendations.J Pain. 2008; 9: 771-783
- Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature.J Dev Behav Pediatr. 2000; 21: 58-69
- Validation of a self-report questionnaire version of the Child Activity Limitations Interview (CALI): The CALI-21.Pain. 2008; 31: 644-652
- Parental report of health-related quality of life in children with sickle cell disease.J Behav Med. 2002; 25: 269-283
- Development and validation of the child activity limitations interview: A measure of pain-related functional impairment.Pain. 2004; 109: 461-470
- Health-related quality of life in sickle cell disease: Past, present, and future.Pediatr Blood Cancer. 2012; 59: 377-385
- The performance of the PedsQL™ Generic Core Scales in children with sickle cell disease.J Pediatr Hematol Oncol. 2008; 30: 666-673
- Pain in sickle cell disease: Rates and risk factors.N Engl J Med. 1991; 325: 11-16
- Daily assessment of pain in adults with sickle cell disease.Ann Intern Med. 2008; 148: 94-101
- Sickle-cell pain: Advances in epidemiology and etiology.Hematology. 2010; 2010: 409-415
- Brief report: Daily mood as a mediator or moderator of the pain-sleep relationship in children with sickle cell disease.J Pediatr Psychol. 2008; 33: 317-322
- PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations.Med Care. 2001; 39: 800-812
- The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory.Med Care. 1999; 37: 126-139
- PROMIS pediatric interference scale: An item response theory analysis of the pediatric pain item bank.J Pain. 2010; 11: 1109-1191
- The Functional Disability Inventory: Measuring a neglected dimension of child health status.J Pediatr Psychol. 1991; 16: 39-58
- Assessment of painful episode frequency in sickle-cell disease.Am J Hematol. 1997; 54: 183-188
- Physical activity and function in adolescents with chronic pain: A controlled study using actigraphy.J Pain. 2012; 13: 121-130
- Daily changes in pain, mood, and physical function in youth hospitalized for sickle cell pain.Pain Res Manag. 2013; 18: 33-38
Published online: May 22, 2013
Accepted: March 26, 2013
Received in revised form: March 8, 2013
Received: September 10, 2012
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.
© 2013 American Pain Society. Published by Elsevier Inc. All rights reserved.