Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN.
Department of Psychology, The University of Memphis, Memphis, TN.
J Pediatr Psychol. 2021 Mar 18;46(3):293-303. doi: 10.1093/jpepsy/jsaa104.
Determining how the health-related quality of life (HRQOL) is impacted by living with Sickle Cell Disease (SCD) can inform psychosocial interventions. The purpose of the present study is to determine if demographic and treatment variables predict membership into empirically derived subgroups of HRQOL among youth and young adults with SCD.
Three hundred and seven youth and young adults with SCD (mean 17.63 years ± 3.74 years, 50.5% female) completed the Pediatric Quality of Life InventoryTM Sickle Cell Disease Module. Latent profile analysis examined subgroups/classes of HRQOL and relationships with demographic and treatment variables.
Three distinct classes emerged: High HRQOL (34% of the sample), Moderate HRQOL (44% of the sample), and Low HRQOL (22% of the sample). Being female was associated with increased odds of being in the moderate or low groups. Living with more severe SCD (genotypes HbSS and HbSβ0 thalassemia) was associated with increased odds of being in the Low HRQOL group. Treatment with chronic red blood cell transfusion therapy was associated with increased odds of being in the High HRQOL group. Older age predicted a small increase in the odds of being in the Low versus High HRQOL group.
The present study adds to the literature on HRQOL in SCD by exploring person-centered, empirically derived groups of HRQOL. Identification of demographic and treatment factors that predict membership into those groups within a large sample assists in tailoring needed psychosocial interventions for youth with SCD.
了解与镰状细胞病（SCD）共存对健康相关生活质量（HRQOL）的影响，可以为心理社会干预提供信息。本研究的目的是确定人口统计学和治疗变量是否可以预测 SCD 青少年和年轻成人 HRQOL 的经验衍生亚组中的成员资格。
307 名患有 SCD 的青少年和年轻成人（平均年龄 17.63±3.74 岁，50.5%为女性）完成了《儿科生活质量量表》镰状细胞病模块。潜在剖面分析检查了 HRQOL 的亚组/类别以及与人口统计学和治疗变量的关系。
出现了三个不同的类别：高 HRQOL（样本的 34%）、中 HRQOL（样本的 44%）和低 HRQOL（样本的 22%）。女性的可能性更高，处于中或低组。患有更严重的 SCD（基因型 HbSS 和 HbSβ0 地贫）与处于低 HRQOL 组的几率增加有关。慢性红细胞输血治疗与处于高 HRQOL 组的几率增加有关。年龄较大预示着处于低与高 HRQOL 组之间的几率略有增加。
本研究通过探索以患者为中心的 HRQOL 的经验衍生亚组，为 SCD 中的 HRQOL 文献增添了新内容。在大型样本中确定预测这些亚组成员资格的人口统计学和治疗因素有助于为 SCD 青少年量身定制所需的心理社会干预措施。
