Department of Psychology, Concordia University, Montreal, QC, Canada.
Department of Psychology, The University of Mississippi, Oxford, MS, United States.
Pain. 2024 Mar 1;165(3):715-722. doi: 10.1097/j.pain.0000000000003079. Epub 2023 Oct 26.
Pain is a primary symptom of sickle cell disease (SCD) and is often severe and chronic. To treat SCD-related pain, proper assessment of SCD pain among youth, including the degree of concordance or agreement between youth and caregiver reports of pain, is essential but has not yet been adequately evaluated. In this study, 525 youth with SCD and their parents were evaluated as part of the Sickle Cell Clinical Research and Intervention Program (SCCRIP) to examine pain rating concordance and predictors of concordance. Youth and parents completed the Pediatric Quality of Life Inventory Sickle Cell Disease module (PedsQL-SCD) to measure pain, pain interference, and pain-related constructs. Disease, clinical, and demographic variables were obtained from the SCCRIP database. Intraclass correlations demonstrated moderate-to-poor consistency between youth and caregiver reports of pain and pain interference (ICCs range from 0.17 to 0.54). Analysis of covariance and regression models found that patient age, frequency of hospitalizations and emergency department (ED) visits, economic hardship, and fetal hemoglobin levels were significantly associated with varying pain-rating agreement levels among parent proxy and child self-report pain. Concordance of pain assessments among youth with SCD and their caregivers using the PedsQL-SCD Module was moderate at best, corroborating prior research. Youth factors predicting discordance among pain-related factors included increased ED visits, older age, and female sex. Collectively, these results bolster the use of integrated pain assessments to reduce parent-child discrepancies, thereby improving the adequacy of SCD-related pain assessment and treatment.
疼痛是镰状细胞病（SCD）的主要症状，通常严重且慢性。为了治疗与 SCD 相关的疼痛，必须对青少年的 SCD 疼痛进行适当评估，包括青少年和照顾者对疼痛报告的一致性或一致性程度，但尚未得到充分评估。在这项研究中，525 名患有 SCD 的青少年及其父母作为镰状细胞临床研究和干预计划（SCCRIP）的一部分进行了评估，以检查疼痛评分的一致性和一致性的预测因素。青少年和父母完成了儿科生活质量镰状细胞病模块（PedsQL-SCD），以衡量疼痛、疼痛干扰和与疼痛相关的结构。从 SCCRIP 数据库中获得疾病、临床和人口统计学变量。组内相关系数表明，青少年和照顾者对疼痛和疼痛干扰的报告之间存在中等至较差的一致性（ICC 范围为 0.17 至 0.54）。协方差和回归模型分析发现，患者年龄、住院和急诊（ED）就诊频率、经济困难和胎儿血红蛋白水平与父母代理和儿童自我报告疼痛的不同疼痛评分一致性水平显著相关。使用 PedsQL-SCD 模块对患有 SCD 的青少年及其护理人员的疼痛评估的一致性充其量是适度的，这与先前的研究相符。与疼痛相关因素的不一致性预测青少年因素包括 ED 就诊次数增加、年龄较大和女性性别。总的来说，这些结果支持使用综合疼痛评估来减少亲子差异，从而提高 SCD 相关疼痛评估和治疗的充分性。
