Aravamuthan Bhooma Rajagopalan, Lott Emma J, Pehlivan Esra, Chintalapati Keerthana, Grenard Deborah, Roge Desiree, Gelineau-Morel Rose, Kyle Dante, Becu Christie, Kruer Michael C, Katus Linn, Gross Paul, Bailes Amy
Department of Neurology, Washington University School of Medicine, St. Louis, MO.
Department of Epidemiology, University of Washington, Seattle.
Neurol Clin Pract. 2025 Jun;15(3):e200469. doi: 10.1212/CPJ.0000000000200469. Epub 2025 Apr 17.
Dystonia is a common, debilitating, and often treatment-refractory motor symptom of cerebral palsy (CP), affecting 70%-80% of this population based on research assessments. However, routine clinical evaluation for dystonia in CP has failed to match these expected numbers. Addressing this diagnostic gap is a medical imperative because the presence of dystonia rules in or out certain treatments for motor symptoms in CP. Therefore, our objective was to optimize rates of clinical dystonia screening to improve rates of clinical dystonia diagnosis.
Using the quality improvement (QI) infrastructure of the Cerebral Palsy Research Network (CPRN), we developed and implemented interventions to increase the documentation percentage of 5 features of dystonia in young people with CP, aged 3-21 years. This QI initiative was implemented by 7 physiatry and pediatric movement disorders physicians at 4 tertiary-care pediatric hospitals between October 10, 2021, and July 1, 2023. Using a prospective cohort study design, we collected visit data across all participating sites every 2 weeks and tracked our progress using control charts.
We assessed 847 unique visits, mostly for established patients (719/847, 85%) who were 9.2 years old on average (95% CI 8.8-9.5). By April 10, 2022, the mean percentage of dystonia screening elements documented across all sites increased from 39% to 90% and the mean percentage of visits explicitly documenting the presence or absence of dystonia increased from 65% to 94%. By October 23, 2022, the percentage of visits diagnosing dystonia increased from 57% to 74%. These increases were all sustained through the end of the study period on July 1, 2023.
Using a rigorous QI-driven process across 4 member sites of a North American learning health network (CPRN), we demonstrated that we could increase screening for dystonia and that this was associated with increased clinical dystonia diagnosis, matching expected research-based rates. We propose that similar screening should take place across all sites caring for people with CP.
肌张力障碍是脑瘫（CP）常见、使人衰弱且往往难以治疗的运动症状，根据研究评估，影响该人群的70%-80%。然而，CP中肌张力障碍的常规临床评估未能达到这些预期数字。弥补这一诊断差距是一项医学要务，因为肌张力障碍的存在决定了CP运动症状的某些治疗方法是否可行。因此，我们的目标是优化临床肌张力障碍筛查率，以提高临床肌张力障碍诊断率。
利用脑瘫研究网络（CPRN）的质量改进（QI）基础设施，我们制定并实施了干预措施，以提高3至21岁CP青年中肌张力障碍5个特征的记录百分比。这项QI计划由4家三级儿科医院的7名物理医学与儿科运动障碍医生在2021年10月10日至2023年7月1日期间实施。采用前瞻性队列研究设计，我们每两周收集所有参与地点的就诊数据，并使用控制图跟踪进展情况。
我们评估了847次独特就诊，大多数是针对确诊患者（719/847，85%），他们的平均年龄为9.2岁（95%CI 8.8-9.5）。到2022年4月10日，所有地点记录的肌张力障碍筛查要素的平均百分比从39%提高到90%，明确记录有无肌张力障碍的就诊平均百分比从65%提高到94%。到2022年10月23日，诊断为肌张力障碍的就诊百分比从57%提高到74%。这些增长在2023年7月1日研究期结束时一直持续。
通过北美学习健康网络（CPRN）的4个成员地点采用严格的QI驱动流程，我们证明可以增加肌张力障碍筛查，并且这与临床肌张力障碍诊断增加相关，与基于研究的预期率相符。我们建议，在所有为CP患者提供护理的地点都应进行类似的筛查。
