Rhodes Erinn T, Phan Thao-Ly T, Earley Elizabeth R, Eneli Ihuoma, Haemer Matthew A, Highfield Nikki C, Khan Saba, Kim Grace, Kirk Shelley, Sullivan Elizabeth Monti, Stoll Janis M, Werk Lloyd N, Zeribi Karen Askov, Forrest Christopher B, Lannon Carole
Division of Endocrinology, Boston Children's Hospital, Boston, MA, USA.
Department of General Pediatrics, Nemours Children's Health System/Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA, USA.
Child Obes. 2024 Jan;20(1):1-10. doi: 10.1089/chi.2022.0151. Epub 2023 Feb 24.
Patient-reported outcomes (PROs) can assess chronic health. The study aims were to pilot a survey through the PEDSnet Healthy Weight Network (HWN), collecting PROs in tertiary care pediatric weight management programs (PWMP) in the United States, and demonstrate that a 50% enrollment rate was feasible; describe PROs in this population; and explore the relationship between child/family characteristics and PROs. Participants included 12- to 18-year-old patients and parents of 5- to 18-year-olds receiving care at PWMP in eight HWN sites. Patient-Reported Outcomes Measurement Information System (PROMIS) measures assessed global health (GH), fatigue, stress, and family relationships (FR). T-score cut points defined poor GH or FR or severe fatigue or stress. Generalized estimating equations explored relationships between patient/family characteristics and PROMIS measures. Overall, 63% of eligible parents and 52% of eligible children enrolled. Seven sites achieved the goal enrollment for parents and four for children. Participants included 1447 children. By self-report, 44.6% reported poor GH, 8.6% poor FR, 9.3% severe fatigue, and 7.6% severe stress. Multiple-parent household was associated with lower odds of poor GH by parent proxy report [adjusted odds ratio (aOR) 0.69, 95% confidence interval (CI) 0.55-0.88] and poor FR by self-report (aOR 0.36, 95% CI 0.17-0.74). Parents were significantly more likely to report that the child had poor GH and poor FR when a child had multiple households. PROs were feasibly assessed across the HWN, although implementation varied by site. Nearly half of the children seeking care in PWMP reported poor GH, and family context may play a role. Future work may build on this pilot to show how PROs can inform clinical care in PWMP.
患者报告结局（PROs）可用于评估慢性健康状况。本研究的目的是通过儿科电子数据网络健康体重网络（HWN）开展一项调查，在美国三级医疗儿科体重管理项目（PWMP）中收集PROs，并证明50%的入组率是可行的；描述该人群的PROs；并探讨儿童/家庭特征与PROs之间的关系。参与者包括在八个HWN站点的PWMP接受治疗的12至18岁患者以及5至18岁患者的父母。患者报告结局测量信息系统（PROMIS）测量指标评估整体健康（GH）、疲劳、压力和家庭关系（FR）。T分数切点定义了较差的GH或FR或严重疲劳或压力。广义估计方程探讨了患者/家庭特征与PROMIS测量指标之间的关系。总体而言，63%符合条件的父母和52%符合条件的儿童入组。七个站点实现了父母的目标入组人数，四个站点实现了儿童的目标入组人数。参与者包括1447名儿童。通过自我报告，44.6%的人报告GH较差，8.6%的人报告FR较差，9%的人报告严重疲劳，7.6%的人报告严重压力。多亲家庭与父母代理报告中较差的GH几率较低相关[调整后的优势比（aOR）为0.69，95%置信区间（CI）为0.55 - 0.88]，与自我报告中较差的FR几率较低相关（aOR为0.36，95%CI为0.17 - 0.74）。当孩子有多个家庭时，父母更有可能报告孩子的GH和FR较差。尽管各站点的实施情况有所不同，但在整个HWN中对PROs进行评估是可行的。在PWMP寻求治疗的儿童中，近一半报告GH较差，家庭背景可能起了作用。未来的工作可以在此试点的基础上，展示PROs如何为PWMP的临床护理提供信息。
