监测镰状细胞病儿童和青少年神经认知风险的临床评估计划。

IF 3 3区 心理学 Q2 CLINICAL NEUROLOGY Clinical Neuropsychologist Pub Date : 2024-09-04 DOI:10.1080/13854046.2024.2399861
Jennifer N Longoria, Jane E Schreiber, Brian Potter, Darcy Raches, Erin MacArthur, Diana Cohen, Marshetta Brazley-Rodgers, Jane S Hankins, Andrew M Heitzer
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引用次数: 0

摘要

目的:镰状细胞病(SCD)是一种遗传性血液病,影响着约 10 万美国人。这种疾病与渐进性器官损伤、脑血管意外和神经认知缺陷有关。美国血液学会(ASH)最近发布的指南建议由心理学家进行认知筛查,以帮助管理该人群的脑血管风险和认知障碍。SCD 患者从神经心理学服务中获益匪浅,一些机构已经制定了监控认知风险的计划。项目简介:我们介绍了本机构的一项纵向神经认知评估项目,该项目为所有 SCD 患者提供服务,无论疾病严重程度或转诊问题如何。镰状细胞神经认知能力评估(SCANS)项目成立于 2012 年。我们概述了该计划的理论框架、评估时间点、测试电池、后勤保障、患者人口统计学、与研究计划的整合以及多学科合作以支持最佳结果。项目成果:在过去十年中,我们的项目已为患者提供了 716 次有针对性的神经心理评估。该项目对近 26% 的患者进行了纵向随访。横向和纵向评估中最常见的诊断包括认知障碍(191 例)、注意力缺陷/多动障碍(75 例)和特殊学习障碍(75 例)。在青春期晚期参加 SCANS 的患者中,约有 87% 成功地从儿科转为成人护理。结论:我们讨论了制定方案以满足该人群需求的注意事项,包括分层评估模型、评估时机、范围和报销。利用以预防为基础的分层模式或针对性评估的计划模式可以帮助为大量患者提供服务。
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A clinical evaluation program to monitor neurocognitive risk in children and adolescents with sickle cell disease.

Objective: Sickle cell disease (SCD) is an inherited hematologic disorder that impacts approximately 100,000 Americans. This disease is associated with progressive organ damage, cerebral vascular accident, and neurocognitive deficits. Recent guidelines from the American Society of Hematology (ASH) recommend cognitive screening with a psychologist to help manage cerebrovascular risk and cognitive impairment in this population. SCD patients benefit from neuropsychology services and several institutions already have programs in place to monitor cognitive risk. Program Description: We describe a longitudinal neurocognitive evaluation program at our institution that serves all patients with SCD, regardless of disease severity or referral question. The Sickle Cell Assessment of Neurocognitive Skills (SCANS) program was established in 2012. We outline the program's theoretical framework, timepoints for evaluation, test battery, logistics, patient demographics, integration with research programming, and multidisciplinary collaboration to support optimal outcomes. Program Outcomes: Our program has provided 716 targeted neuropsychological evaluations for patients over the last decade. Nearly 26% of patients in the program have been followed longitudinally. The most common diagnoses generated across cross-sectional and longitudinal evaluations include cognitive disorder (n = 191), attention-deficit/hyperactivity disorder (n = 75), and specific learning disorder (n = 75). Approximately 87% of patients who participated in SCANS during late adolescence successfully transitioned from pediatric to adult care. Conclusion: We discuss considerations for developing programming to meet the needs of this population, including tiered assessment models, timing of evaluations, scope, and reimbursement. Program models that utilize prevention-based tiered models or targeted evaluations can assist with serving large volumes of patients.

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来源期刊
Clinical Neuropsychologist
Clinical Neuropsychologist 医学-临床神经学
CiteScore
8.40
自引率
12.80%
发文量
61
审稿时长
6-12 weeks
期刊介绍: The Clinical Neuropsychologist (TCN) serves as the premier forum for (1) state-of-the-art clinically-relevant scientific research, (2) in-depth professional discussions of matters germane to evidence-based practice, and (3) clinical case studies in neuropsychology. Of particular interest are papers that can make definitive statements about a given topic (thereby having implications for the standards of clinical practice) and those with the potential to expand today’s clinical frontiers. Research on all age groups, and on both clinical and normal populations, is considered.
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