Aspesberro François, Fesinmeyer Megan D, Zhou Chuan, Zimmerman Jerry J, Mangione-Smith Rita
1Department of Pediatrics, Seattle Children's Hospital, University of Washington, Seattle, WA. 2Department of Pediatrics, Seattle Children's Research Institute, Center for Child Health, Behavior and Development, Seattle, WA. 3Department of Pediatrics, University of Washington, Seattle, WA.
Pediatr Crit Care Med. 2016 Jun;17(6):e272-9. doi: 10.1097/PCC.0000000000000727.
To assess the construct validity and the responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and Infant Scales in the medical-surgical (PICU) and cardiac PICU.
DESIGN/SETTING/PARTICIPANTS: Prospective cohort study of 367 inpatients admitted either to the PICU or the cardiac ICU at Seattle Children's Hospital from January 2012 to June 2013. Parent/caregiver and child (≥ 8 yr old, developmentally appropriate, and critical illness resolved) Pediatric Quality of Life Inventory scores were obtained within 24 hours of PICU/cardiac ICU discharge and subsequently at 4-12 weeks following hospital discharge. Of the 491 eligible participants invited to participate, 367 (74.7% response rate) completed the Pediatric Quality of Life Inventory survey at ICU discharge, and of these, 263 (71.7% follow-up response rate) completed the follow-up survey 4-12 weeks after hospital discharge.
Responsiveness was assessed by calculating improvement scores (difference between follow-up and ICU discharge scores, Δ Pediatric Quality of Life Inventory). Construct validity was examined by comparing mean improvement scores for known groups differing by medical complexity. At follow-up, [INCREMENT] Pediatric Quality of Life Inventory scores were as follows (mean ± SD): physical domain, 34.8 ± 32.0; and psychosocial domain, 23.1 ± 23.5. Patients with complex chronic or noncomplex chronic disease had physical functioning improvement scores that were 17.4 points (95% CI, -28.3 to -6.5; p < 0.001) and 19.5 points (95% CI, -30.4 to -8.5; p < 0.002) lower than children with no chronic illness, respectively. Patients with complex chronic disease exhibited psychosocial improvement scores that were 9.6 points (95% CI, -18.4 to -0.8; p < 0.033) lower than patients without chronic disease. Patients with noncomplex chronic disease had similar psychosocial improvement scores when compared with patients without chronic disease.
As a measure of health-related quality of live, Pediatric Quality of Life Inventory demonstrated responsiveness and construct validity in a broad population of critically ill children. This measure represents a patient-centered clinically meaningful patient-or-parent-reported outcome measure for pediatric research assessing the clinical effectiveness of PICU/cardiac ICU interventions. When using health-related quality of life recovery as an outcome measure to assess clinical effectiveness in the PICU/cardiac ICU setting, measuring and controlling for the level of medical complexity is important in order to understand the true impact of clinical interventions.
评估儿童生活质量量表4.0通用核心量表和婴儿量表在外科重症监护病房（PICU）及心脏重症监护病房的结构效度和反应度。
设计/地点/参与者：对2012年1月至2013年6月在西雅图儿童医院PICU或心脏重症监护病房住院的367名患者进行前瞻性队列研究。在PICU/心脏重症监护病房出院后24小时内，以及随后出院后4 - 12周，获取家长/照顾者及儿童（≥8岁，发育正常且危重病已缓解）的儿童生活质量量表评分。在受邀参与的491名符合条件的参与者中，367名（应答率74.7%）在重症监护病房出院时完成了儿童生活质量量表调查，其中263名（随访应答率71.7%）在出院后4 - 12周完成了随访调查。
通过计算改善分数（随访评分与重症监护病房出院评分之差，即儿童生活质量量表的Δ值）评估反应度。通过比较因医疗复杂性不同的已知组的平均改善分数来检验结构效度。随访时，儿童生活质量量表评分如下（均值±标准差）：身体领域，34.8±32.0；心理社会领域，23.1±23.5。患有复杂慢性病或非复杂慢性病的患者，其身体功能改善分数分别比无慢性病儿童低17.4分（95%置信区间，-28.3至-6.5；p<0.001）和19.5分（95%置信区间，-30.4至-8.5；p<0.002）。患有复杂慢性病的患者心理社会改善分数比无慢性病患者低9.6分（95%置信区间，-18.4至-0.8；p<0.033）。与无慢性病患者相比，患有非复杂慢性病的患者心理社会改善分数相似。
作为健康相关生活质量的一项测量指标，儿童生活质量量表在广泛的危重病儿童群体中显示出反应度和结构效度。该指标代表了一种以患者为中心、具有临床意义的患者或家长报告的结局指标，用于儿科研究评估PICU/心脏重症监护病房干预措施的临床效果。在使用健康相关生活质量恢复作为结局指标评估PICU/心脏重症监护病房环境下的临床效果时，测量并控制医疗复杂性水平对于理解临床干预的真实影响很重要。
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