Shriners Hospitals for Children-Chicago, Chicago, IL, USA.
Center for Outcomes and Measurement, Jefferson College of Rehabilitation Sciences, Department of Physical Medicine, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA.
Spinal Cord. 2020 Oct;58(10):1134-1142. doi: 10.1038/s41393-020-0450-6. Epub 2020 Apr 8.
It is a qualitative study.
To develop the items and support content validity for the Pediatric Quality of Life Inventory™ (PedsQL™) Spinal Cord Injury Module for youth and emerging adults with spinal cord injury (SCI).
Community and children's hospital.
A comprehensive literature review was conducted in pediatric and SCI-specific health-related quality-of-life (HRQoL) measures to create an item bank. A multidisciplinary panel of experts convened to discuss the conceptual framework of the module, reviewed the item bank, and generated a core set of items through a process of "binning-and-winnowing". International clinicians and researchers participated in iterative rounds of a Modified Delphi survey, until 90% agreement was reached on all items of the core set, resulting in the construction of a preliminary module. Cognitive interviews were conducted on individuals with SCI and their parents to determine the relevance of items and age-appropriate wording of the preliminary module. The research team regularly reviewed transcriptions of the interviews, and incorporated participant feedback to modify the modules. This process was repeated until content saturation was achieved.
A total of 43 participants completed the cognitive interviews. Following five iterations of cognitive interviews and modifications based on participant input, the PedsQL™ SCI Module was generated. It comprised 67 items in the 12 domains of Daily Activities, Mobility, Bladder Function, Bowel Function, Muscle Spasms, Pressure Injury, Pain, Orthostatic Hypotension, Autonomic Dysreflexia, Participation, Worry, and Emotions.
The PedsQL™ SCI Module was developed using well-established qualitative methods. Internet-based field testing is underway to finalize its development and validation.
这是一项定性研究。
为患有脊髓损伤的青年和成年患者开发儿科生活质量量表（PedsQL）脊髓损伤模块的项目和支持内容效度。
社区和儿童医院。
对儿科和脊髓损伤特定的健康相关生活质量（HRQoL）措施进行全面的文献回顾，以创建一个项目库。一个多学科的专家小组召开会议，讨论模块的概念框架，审查项目库，并通过“分类和淘汰”过程生成一组核心项目。国际临床医生和研究人员参与了修改后的德尔菲调查的迭代回合，直到对核心项目的所有项目达成 90%的共识，从而构建了初步模块。对脊髓损伤患者及其父母进行认知访谈，以确定项目的相关性和初步模块的适合年龄的措辞。研究团队定期审查访谈的文字记录，并结合参与者的反馈意见修改模块。这个过程一直重复，直到达到内容饱和。
共有 43 名参与者完成了认知访谈。在基于参与者输入的五次迭代认知访谈和修改后，生成了 PedsQL 脊髓损伤模块。它由 12 个领域的 67 个项目组成，包括日常活动、移动性、膀胱功能、肠道功能、肌肉痉挛、压疮、疼痛、直立性低血压、自主反射异常、参与、担忧和情绪。
PedsQL 脊髓损伤模块是使用成熟的定性方法开发的。正在进行基于互联网的现场测试，以最终确定其开发和验证。
