Desai Virendra R, Gadgil Nisha, Saad Shahbaz, Raskin Jeffrey S, Lam Sandi K
Division of Pediatric Neurosurgery, Texas Children's Hospital, Houston, Texas, USA; Department of Neurosurgery, Baylor College of Medicine, Houston, Texas, USA.
Division of Pediatric Neurosurgery, Texas Children's Hospital, Houston, Texas, USA; Department of Neurosurgery, Baylor College of Medicine, Houston, Texas, USA.
World Neurosurg. 2019 Feb;122:252-265. doi: 10.1016/j.wneu.2018.10.194. Epub 2018 Nov 3.
Improving value in healthcare means optimizing outcomes and minimizing costs. The emerging pay-for-performance era requires understanding of the effect of healthcare services on health-related quality of life (HRQoL). Pediatric and surgical subspecialties have yet to fully integrate HRQoL measures into practice. The present study reviewed and characterized the HRQoL outcome measures across various pediatric neurosurgical diagnoses.
A literature review was performed by searching PubMed and Google Scholar with search terms such as "health-related quality of life" and "pediatric neurosurgery" and then including the specific pathologies for which a HRQoL instrument was found (e.g., "health-related quality of life" plus "epilepsy"). Each measurement was evaluated by content and purpose, relative strengths and weaknesses, and validity.
We reviewed 68 reports. Epilepsy, brain tumor, cerebral palsy, spina bifida, hydrocephalus, and scoliosis were diagnoses found in reported studies that had used disease-specific HRQoL instruments. Information using general HRQoL instruments was also reported. Internal, test-retest, and/or interrater reliability varied across the instruments, as did face, content, concurrent, and/or construct validity. Few instruments were tested enough for robust reliability and validity. Significant variability was found in the usage of these instruments in clinical studies within pediatric neurosurgery.
The HRQoL instruments used in pediatric neurosurgery are currently without standardized guidelines and thus exhibit high variability in use. Clinicians should support the development and application of these methods to optimize these instruments, promote standardization of research, improve performance measures to reflect clinically modifiable and meaningful outcomes, and, ultimately, lead the national discussion in healthcare quality and patient-centered care.
提高医疗保健的价值意味着优化治疗效果并使成本最小化。新兴的按绩效付费时代要求了解医疗服务对健康相关生活质量（HRQoL）的影响。儿科和外科亚专业尚未将HRQoL测量方法充分纳入实践。本研究回顾并描述了各种儿科神经外科诊断中的HRQoL结局测量方法。
通过在PubMed和谷歌学术上搜索“健康相关生活质量”和“儿科神经外科”等检索词进行文献综述，然后纳入发现有HRQoL工具的特定病理情况（例如，“健康相关生活质量”加“癫痫”）。对每项测量方法从内容和目的、相对优势和劣势以及效度方面进行评估。
我们回顾了68份报告。癫痫、脑肿瘤、脑瘫、脊柱裂、脑积水和脊柱侧弯是已报道研究中使用特定疾病HRQoL工具的诊断情况。也有使用一般HRQoL工具的相关信息报道。不同工具的内部信度、重测信度和/或评分者间信度各不相同，表面效度、内容效度、同时效度和/或结构效度也是如此。很少有工具经过充分测试以具备可靠的信度和效度。在儿科神经外科的临床研究中，这些工具的使用存在显著差异。
目前儿科神经外科使用的HRQoL工具没有标准化指南，因此在使用中表现出很大差异。临床医生应支持这些方法的开发和应用，以优化这些工具，促进研究的标准化，改进绩效测量方法以反映临床上可改变且有意义的结果，并最终引领关于医疗质量和以患者为中心的医疗的全国性讨论。
