Vinney Lisa A, Grade John D, Connor Nadine P
Department of Communicative Disorders, University of Wisconsin-Madison, Goodnight Hall, Madison, WI 53706, United States.
J Commun Disord. 2012 Jan-Feb;45(1):12-9. doi: 10.1016/j.jcomdis.2011.10.001. Epub 2011 Oct 20.
The manner in which a communication disorder affects health-related quality of life (QOL) in children is not known. Unfortunately, collection of quality of life data via traditional paper measures is labor intensive and has several other limitations, which hinder the investigation of pediatric quality of life in children. Currently, there is not sufficient research regarding the use of electronic devices to collect pediatric patient reported outcomes in order to address such limitations. Thus, we used a cross-over design to compare responses to a pediatric health quality of life instrument (PedsQL 4.0) delivered using a handheld electronic device to those from a traditional paper form. Respondents were children with (n=9) and without (n=10) a speech or voice disorder. For paper versus the electronic format, we examined time to completion, number of incomplete or inaccurate question responses, intra-rater reliability, ease of use, and child and parent preference. There were no significant differences between children's scores, time to complete the measure, or ratings related to ease of answering questions. The percentage of children who made answering errors or omissions with paper and pencil was significantly greater than the percentage of children who made such errors using the device. This preliminary study demonstrated that use of an electronic device to collect QOL or patient-reported outcomes (PRO) data from children is more efficient than and just as feasible, reliable, and acceptable as using paper forms. The development of hardware and software applications for the collection of QOL and/or PRO data in children with speech disorders is likely warranted.
The reader will be able to understand: (1) The potential benefits of using electronic data capture via handheld devices for collecting pediatric patient reported outcomes; (2) The Pediatric Quality of Life Inventory 4.0 is a measure of the perception of general health quality that has distinguished between healthy children and those with chronic health conditions; (3) Past research in communication disorders indicates that voice and speech disorders may impact quality of life in children; (4) Based on preliminary data, electronic collection of patient reported outcomes in children with and without speech/voice disorders is more efficient and equally feasible, reliable, and acceptable when compared to paper forms.
沟通障碍影响儿童健康相关生活质量(QOL)的方式尚不清楚。不幸的是,通过传统纸质量表收集生活质量数据劳动强度大且存在其他一些局限性,这阻碍了对儿童生活质量的研究。目前,关于使用电子设备收集儿科患者报告结局以解决此类局限性的研究还不够充分。因此,我们采用交叉设计,比较使用手持电子设备提供的儿科健康生活质量量表(儿童生活质量量表4.0版,PedsQL 4.0)与传统纸质表格的回答情况。受访者为有(n = 9)和无(n = 10)言语或嗓音障碍的儿童。对于纸质版与电子版,我们考察了完成时间、不完整或不准确问题回答的数量、评分者内信度、易用性以及儿童和家长的偏好。儿童得分、完成测量的时间或与回答问题难易程度相关的评分之间没有显著差异。使用纸笔答题出现回答错误或遗漏的儿童百分比显著高于使用该设备答题出现此类错误的儿童百分比。这项初步研究表明,使用电子设备从儿童中收集生活质量或患者报告结局(PRO)数据比使用纸质表格更高效,且同样可行、可靠和可接受。开发用于收集言语障碍儿童生活质量和/或PRO数据的硬件和软件应用可能是有必要的。
读者将能够理解:(1)通过手持设备进行电子数据采集以收集儿科患者报告结局的潜在益处;(2)儿童生活质量量表4.0版是一种衡量总体健康质量感知的量表,已区分了健康儿童和患有慢性健康状况的儿童;(3)过去关于沟通障碍的研究表明,嗓音和言语障碍可能影响儿童的生活质量;(4)根据初步数据,与纸质表格相比,在有和无言语/嗓音障碍的儿童中电子收集患者报告结局更高效,且同样可行、可靠和可接受。