Division of Pain and Palliative Medicine, Department of Pediatrics, Connecticut Children's Medical Center, Hartford, Connecticut 06106, USA.
J Pain. 2013 Sep;14(9):975-82. doi: 10.1016/j.jpain.2013.03.007. Epub 2013 May 20.
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.
本研究旨在开发和验证一种简短、临床相关、多维的访谈，以评估镰状细胞病（SCD）患儿和青少年的疼痛负担。Sickle Cell Disease Pain Burden Interview-Youth（SCPBI-Y）是使用专家小组、患者和护理人员开发的。在 4 家城市儿童医院招募了 7 至 21 岁的 SCD 儿童和青少年（N=129）进行验证。参与者来自住院（n=62）和门诊（n=67）环境。SCPBI-Y 表现出很强的内部一致性可靠性、跨信息提供者一致性（儿童-护理人员）和测试-重测可靠性（门诊环境）。与功能能力、疼痛和生活质量的有效衡量标准相比，中等结构有效性。SCPBI-Y 还通过在住院与门诊环境中的青少年以及 SCD 症状严重程度之间的对比组方法，以及通过 SCPBI-Y 与情绪之间的差异验证了其结构有效性，表明住院环境中的青少年和疾病严重程度较高的青少年表现出更大的疼痛负担。我们的初步研究结果表明，SCPBI-Y 是一种有效且可靠的多维访谈，可以在不同的临床环境中用于评估 SCD 青少年的疼痛负担。
多方面的疼痛评估对于为 SCD 儿童和青少年提供最佳护理至关重要；然而，目前的评估冗长且繁琐，在临床上难以实施。本研究介绍并验证了一种简短、临床有用的多维访谈，专门用于评估 SCD 青少年的疼痛负担。
