Jennifer N Longoria, Jane E Schreiber, Brian Potter, Darcy Raches, Erin MacArthur, Diana Cohen, Marshetta Brazley-Rodgers, Jane S Hankins, Andrew M Heitzer
{"title":"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。","authors":"Jennifer N Longoria, Jane E Schreiber, Brian Potter, Darcy Raches, Erin MacArthur, Diana Cohen, Marshetta Brazley-Rodgers, Jane S Hankins, Andrew M Heitzer","doi":"10.1080/13854046.2024.2399861","DOIUrl":null,"url":null,"abstract":"<p><p><b>Objective:</b> 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. <b>Program Description:</b> 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. <b>Program Outcomes:</b> 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 (<i>n</i> = 191), attention-deficit/hyperactivity disorder (<i>n</i> = 75), and specific learning disorder (<i>n</i> = 75). Approximately 87% of patients who participated in SCANS during late adolescence successfully transitioned from pediatric to adult care. <b>Conclusion:</b> 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.</p>","PeriodicalId":55250,"journal":{"name":"Clinical Neuropsychologist","volume":null,"pages":null},"PeriodicalIF":3.0000,"publicationDate":"2024-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"A clinical evaluation program to monitor neurocognitive risk in children and adolescents with sickle cell disease.\",\"authors\":\"Jennifer N Longoria, Jane E Schreiber, Brian Potter, Darcy Raches, Erin MacArthur, Diana Cohen, Marshetta Brazley-Rodgers, Jane S Hankins, Andrew M Heitzer\",\"doi\":\"10.1080/13854046.2024.2399861\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Objective:</b> 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. <b>Program Description:</b> 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. <b>Program Outcomes:</b> 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 (<i>n</i> = 191), attention-deficit/hyperactivity disorder (<i>n</i> = 75), and specific learning disorder (<i>n</i> = 75). Approximately 87% of patients who participated in SCANS during late adolescence successfully transitioned from pediatric to adult care. <b>Conclusion:</b> 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.</p>\",\"PeriodicalId\":55250,\"journal\":{\"name\":\"Clinical Neuropsychologist\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.0000,\"publicationDate\":\"2024-09-04\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Clinical Neuropsychologist\",\"FirstCategoryId\":\"102\",\"ListUrlMain\":\"https://doi.org/10.1080/13854046.2024.2399861\",\"RegionNum\":3,\"RegionCategory\":\"心理学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Clinical Neuropsychologist","FirstCategoryId":"102","ListUrlMain":"https://doi.org/10.1080/13854046.2024.2399861","RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
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.
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.