Badawy Sherif M, Thompson Alexis A, Holl Jane L, Penedo Frank J, Liem Robert I
a Department of Pediatrics , Feinberg School of Medicine at Northwestern University , Chicago , IL, USA.
b Division of Hematology , Oncology and Stem Cell Transplant, Ann & Robert H. Lurie Children's Hospital of Chicago , Chicago , IL, USA.
Pediatr Hematol Oncol. 2018 Aug-Sep;35(5-6):297-308. doi: 10.1080/08880018.2018.1505988. Epub 2019 Jan 12.
Sickle cell disease (SCD) complications lead to poor health-related quality of life (HRQOL) and increased healthcare utilization in this population, which could be mitigated with hydroxyurea therapy; however, adherence is suboptimal. We assessed the relationship of healthcare utilization to hydroxyurea adherence and HRQOL amongst youth with SCD.
Thirty-four patients with SCD (median age 14 years, IQR 12-18) on hydroxyurea participated in this cross-sectional study and completed Morisky Adherence Scale 8-items and Patient Reported Outcomes Measurement Information System (PROMIS®) HRQOL measures. A medical chart review was conducted to assess healthcare utilization.
Participants with more frequent hospitalizations and emergency room (ER) visits and longer length of stay (LOS) had significantly lower fetal hemoglobin (r=-0.44; r=-0.45; r=-0.46, p < 0.05) and mean corpuscular volume (r=-0.47; r=-0.42; r=-0.48, p < 0.05), respectively. More frequent hospitalizations and ER visits and longer LOS correlated significantly with worse fatigue (r=0.51; r=0.41; r=0.53, p < 0.05), pain (r=0.41; r=0.38; r=0.47, p < 0.05), physical function mobility (r=-0.67; r=-0.59; r=-0.67, p < 0.05), depression (r=0.38; r=0.31; r=0.42, p < 0.05), and social isolation (r=0.76; r=0.76; r=-0.84, p < 0.05), respectively.
We conclude that increased healthcare utilization in youth with SCD is associated with low adherence to hydroxyurea and worse HRQOL domain scores. It is important emphasize the clinical benefits of high adherence to hydroxyurea, particularly among youth with SCD. Future longitudinal studies are warranted to assess the directionality of these relationships, and may reveal modifiable behavioral factors associated with early changes in hydroxyurea adherence levels.
镰状细胞病（SCD）并发症导致该人群健康相关生活质量（HRQOL）较差，医疗保健利用率增加，羟基脲疗法可缓解这些问题；然而，依从性并不理想。我们评估了SCD青少年的医疗保健利用率与羟基脲依从性及HRQOL之间的关系。
34名接受羟基脲治疗的SCD患者（中位年龄14岁，四分位间距12 - 18岁）参与了这项横断面研究，并完成了Morisky依从性量表8项条目以及患者报告结局测量信息系统（PROMIS®）的HRQOL测量。进行病历审查以评估医疗保健利用率。
住院和急诊室（ER）就诊更频繁且住院时间（LOS）更长的参与者，其胎儿血红蛋白水平显著更低（r = -0.44；r = -0.45；r = -0.46，p < 0.05），平均红细胞体积也显著更低（r = -0.47；r = -0.42；r = -0.48，p < 0.05）。住院和急诊室就诊更频繁以及住院时间更长分别与更严重的疲劳（r = 0.51；r = 0.41；r = 0.53，p < 0.05）、疼痛（r = 0.41；r = 0.38；r = 0.47，p < 0.05）、身体功能活动能力（r = -0.67；r = -0.59；r = -0.67，p < 0.05）、抑郁（r = 0.38；r = 0.31；r = 0.42，p < 0.05）和社交隔离（r = 0.76；r = 0.76；r = -0.84，p < 0.05）显著相关。
我们得出结论，SCD青少年医疗保健利用率的增加与羟基脲依从性低及HRQOL领域得分较差有关。强调高依从性使用羟基脲的临床益处很重要，特别是在SCD青少年中。未来有必要进行纵向研究以评估这些关系的方向性，并可能揭示与羟基脲依从性水平早期变化相关的可改变行为因素。
