Claassen Daniel O, Riordan Heather R, Dure Leon S, Battini Roberta, Cortez Alma, Gordon Mark Forrest, O'Connor Meaghan, Jackson Kristi, Foster April, Kosinski Mark
Vanderbilt University Medical Center, Nashville, Tennessee.
Vanderbilt University Medical Center, Nashville, Tennessee.
Pediatr Neurol. 2023 Apr;141:65-71. doi: 10.1016/j.pediatrneurol.2022.12.005. Epub 2022 Dec 15.
Dyskinetic cerebral palsy (DCP), a lifelong neurological disorder beginning in early childhood, manifests with hyperkinetic movements and dystonia. The Movement Disorder-Childhood Rating Scale (MD-CRS) is a clinician-reported outcome measure assessing the intensity of movement disorders and their effect on daily life in pediatric patients. Content validity of clinical outcome assessments is key to accurately capturing patient perspective. Evidence demonstrating content validity of the MD-CRS in patients with DCP is needed. This study captures input from patients with DCP and their caregivers regarding the content validity of the MD-CRS.
This qualitative, noninterventional, cross-sectional study included interviews with children/adolescents (aged six to 18 years) with DCP and caregivers of children with DCP. Participants were asked to describe body regions and daily functions affected by DCP. Caregivers also reviewed MD-CRS Part I to evaluate the relevance of the items and corresponding response options. Descriptions of DCP were coded and mapped to MD-CRS items and response options. Caregiver feedback on MD-CRS Part I was analyzed using inductive content analysis.
Eight patients and 12 caregivers were interviewed. Participants confirmed that the body regions and activities listed in the MD-CRS were affected by DCP and that involuntary movements interfered with all motor, oral/verbal, self-care, and video protocol activities. Caregivers endorsed the response options for 12 of 15 items in MD-CRS Part I and suggested clarifications for others.
Participants confirmed that affected body regions and activities listed in the MD-CRS were relevant to their experience with DCP, demonstrating the content validity of this tool in children/adolescents with DCP.
运动障碍型脑瘫（DCP）是一种始于幼儿期的终身性神经疾病，表现为运动亢进和肌张力障碍。儿童运动障碍评定量表（MD-CRS）是一种由临床医生报告的结局指标，用于评估小儿患者运动障碍的强度及其对日常生活的影响。临床结局评估的内容效度是准确把握患者观点的关键。需要有证据证明MD-CRS在DCP患者中的内容效度。本研究收集了DCP患者及其照料者对MD-CRS内容效度的意见。
这项定性、非干预性横断面研究包括对6至18岁的DCP儿童/青少年及其照料者进行访谈。参与者被要求描述受DCP影响的身体部位和日常功能。照料者还对MD-CRS第一部分进行了评估，以评价各条目及相应回答选项的相关性。对DCP的描述进行编码，并与MD-CRS条目及回答选项进行映射。采用归纳性内容分析法分析照料者对MD-CRS第一部分的反馈。
共访谈了8名患者和12名照料者。参与者确认MD-CRS中列出的身体部位和活动受到DCP的影响，并且不自主运动干扰了所有的运动、口腔/言语、自我护理和视频记录活动。照料者认可MD-CRS第一部分15个条目中12个条目的回答选项，并对其他条目提出了澄清建议。
参与者确认MD-CRS中列出的受影响身体部位和活动与他们的DCP经历相关，证明了该工具在DCP儿童/青少年中的内容效度。
