Children's Hospital of the King's Daughters, Norfolk, VA, USA; Eastern Virginia Medical School, Norfolk, VA, USA; Old Dominion University, Norfolk, VA, USA; Virginia Consortium Program in Clinical Psychology, Norfolk, VA, USA.
Old Dominion University, Norfolk, VA, USA; Virginia Consortium Program in Clinical Psychology, Norfolk, VA, USA.
J Pediatr Surg. 2019 Nov;54(11):2257-2260. doi: 10.1016/j.jpedsurg.2019.03.019. Epub 2019 Apr 24.
While body image disturbances and quality of life in persons with pectus excavatum (PE) have been well documented, very little has been done to systematically measure and document the same in patients with pectus carinatum (PC). Because of this, the current study aimed to develop and validate an instrument to assess body image related quality of life in patients with PC and their parents.
Participants: Two waves of data collection took place. The development phase enrolled 78 PC patients and 76 matched parents. The validation phase enrolled 50 PC patients and 50 parents. Mean age at the initiation of treatment was 15.14 (SD = 2.54). Participants were mostly boys (85.9%) and White or Caucasian (89.7%). Instrument development, refinement, and validation: A group of 5 experts in chest wall deformities used existing measures of body image disturbances in PE, combined with the broader body image literature, to develop larger item pools for patients and their parents. Item analysis from this phase was used to remove poorly performing or statistically redundant items. In the validation phase, refined patient and parent instruments were examined using exploratory principal components factor analysis (EFA) with parallel analysis for factor retention, followed by Varimax rotation to identify a final factor solution.
RESULTS/DISCUSSION: This development and refinement process yielded a final questionnaire for patients (18 items) and parents (15 items). The patient questionnaire includes four subscales, each with good internal consistency: Body Image Disturbance; Treatment Motivation/Engagement; Physical Limitations; and Social Disadvantage. The parent questionnaire includes 3 subscales: Body Image Disturbance; Treatment Motivation/Engagement; Physical Limitations. Patient and parent scales showed moderate correlations. Among patients with measures pre- and posttreatment, there was a significant improvement in overall PeCBI-QOL score. We demonstrate, in this study, that body image and related quality of life can be reliably and validly assessed with the PeCBI-QOL, which has implications for more comprehensively documenting the negative psychological and functional consequences of pectus carinatum.
TYPE OF STUDY/LEVEL OF EVIDENCE: Study of diagnostic test/III.
虽然已经有大量文献记录了鸡胸（pectus excavatum，PE）患者的身体意象障碍和生活质量，但对于漏斗胸（pectus carinatum，PC）患者，很少有系统的测量和记录。因此，本研究旨在开发和验证一种用于评估 PC 患者及其父母身体意象相关生活质量的工具。
参与者：分两个阶段进行数据收集。发展阶段纳入 78 名 PC 患者和 76 名匹配的父母。验证阶段纳入 50 名 PC 患者和 50 名父母。治疗开始时的平均年龄为 15.14 岁（SD=2.54）。参与者主要为男性（85.9%）和白种人或高加索人（89.7%）。工具的开发、完善和验证：一组 5 名胸壁畸形专家使用 PE 中现有的身体意象障碍测量方法，结合更广泛的身体意象文献，为患者及其父母开发了更大的项目池。来自这一阶段的项目分析用于删除表现不佳或在统计学上冗余的项目。在验证阶段，对完善后的患者和家长问卷采用探索性主成分因子分析（EFA），并用平行分析保留因子，然后进行方差极大旋转以确定最终的因子解。
结果/讨论：通过这一开发和完善过程，我们得到了最终的患者问卷（18 个项目）和家长问卷（15 个项目）。患者问卷包括四个具有良好内部一致性的子量表：身体意象障碍；治疗动机/参与度；身体限制；和社会劣势。家长问卷包括 3 个子量表：身体意象障碍；治疗动机/参与度；身体限制。患者和家长量表之间存在中度相关性。在有治疗前后测量的患者中，整体 PeCBI-QOL 评分显著提高。我们在这项研究中证明，身体意象和相关生活质量可以用 PeCBI-QOL 可靠且有效地评估，这对更全面地记录漏斗胸的负面心理和功能后果具有重要意义。
研究类型/证据水平：诊断测试研究/III 级。
