Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter
Abstract Objectives Investigate the results and usability of the Vineland‐3 as an outcome measure in vanishing white matter patients. Methods A cross‐sectional investigation of the Vineland‐3 based on interviews with caregivers, the Health Utilities Index, and the modified Rankin Scale in 64 vanishi...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2024-03-01
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| Series: | Annals of Clinical and Translational Neurology |
| Online Access: | https://doi.org/10.1002/acn3.51985 |
| _version_ | 1797244968712011776 |
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| author | Daphne H. Schoenmakers Irene vanBeelen Marije M.C. Voermans Denise Perik Menno D. Stellingwerff Nicole I. Wolf Johannes Berkhof Marjo S. van derKnaap |
| author_facet | Daphne H. Schoenmakers Irene vanBeelen Marije M.C. Voermans Denise Perik Menno D. Stellingwerff Nicole I. Wolf Johannes Berkhof Marjo S. van derKnaap |
| author_sort | Daphne H. Schoenmakers |
| collection | DOAJ |
| description | Abstract Objectives Investigate the results and usability of the Vineland‐3 as an outcome measure in vanishing white matter patients. Methods A cross‐sectional investigation of the Vineland‐3 based on interviews with caregivers, the Health Utilities Index, and the modified Rankin Scale in 64 vanishing white matter patients. Results Adaptive behavior measured with the Vineland‐3 is impaired in the vast majority of vanishing white matter patients and significantly impacts daily life. Typically, the daily living skills domain is most severely affected and the socialization domain is the least affected. Based on the metric properties and the clinical relevance, the standard scores for the daily living skills domain and Adaptive Behavior Composite have the best properties to be used as an outcome measure. Interpretation The Vineland‐3 appears to be a useful outcome measure to explore and quantify complex cognitive, behavioral, and psychiatric impairments affecting daily functioning in vanishing white matter. Further research should address the longitudinal evaluation of this tool and its additional value to standard neuropsychological and clinical examination. |
| first_indexed | 2024-04-24T19:19:26Z |
| format | Article |
| id | doaj.art-2f687ce0e8ea4cd9b40d2995598ebc3d |
| institution | Directory Open Access Journal |
| issn | 2328-9503 |
| language | English |
| last_indexed | 2024-04-24T19:19:26Z |
| publishDate | 2024-03-01 |
| publisher | Wiley |
| record_format | Article |
| series | Annals of Clinical and Translational Neurology |
| spelling | doaj.art-2f687ce0e8ea4cd9b40d2995598ebc3d2024-03-26T03:13:57ZengWileyAnnals of Clinical and Translational Neurology2328-95032024-03-0111365066110.1002/acn3.51985Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matterDaphne H. Schoenmakers0Irene vanBeelen1Marije M.C. Voermans2Denise Perik3Menno D. Stellingwerff4Nicole I. Wolf5Johannes Berkhof6Marjo S. van derKnaap7Department of Child Neurology Emma's Children's Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Child Neurology Emma's Children's Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Child Neurology Emma's Children's Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Medical Psychology Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Child Neurology Emma's Children's Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Child Neurology Emma's Children's Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Epidemiology and Data Science Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsDepartment of Child Neurology Emma's Children's Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam The NetherlandsAbstract Objectives Investigate the results and usability of the Vineland‐3 as an outcome measure in vanishing white matter patients. Methods A cross‐sectional investigation of the Vineland‐3 based on interviews with caregivers, the Health Utilities Index, and the modified Rankin Scale in 64 vanishing white matter patients. Results Adaptive behavior measured with the Vineland‐3 is impaired in the vast majority of vanishing white matter patients and significantly impacts daily life. Typically, the daily living skills domain is most severely affected and the socialization domain is the least affected. Based on the metric properties and the clinical relevance, the standard scores for the daily living skills domain and Adaptive Behavior Composite have the best properties to be used as an outcome measure. Interpretation The Vineland‐3 appears to be a useful outcome measure to explore and quantify complex cognitive, behavioral, and psychiatric impairments affecting daily functioning in vanishing white matter. Further research should address the longitudinal evaluation of this tool and its additional value to standard neuropsychological and clinical examination.https://doi.org/10.1002/acn3.51985 |
| spellingShingle | Daphne H. Schoenmakers Irene vanBeelen Marije M.C. Voermans Denise Perik Menno D. Stellingwerff Nicole I. Wolf Johannes Berkhof Marjo S. van derKnaap Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter Annals of Clinical and Translational Neurology |
| title | Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter |
| title_full | Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter |
| title_fullStr | Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter |
| title_full_unstemmed | Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter |
| title_short | Adaptive behavior assessed by Vineland‐3 as comprehensive outcome measure in vanishing white matter |
| title_sort | adaptive behavior assessed by vineland 3 as comprehensive outcome measure in vanishing white matter |
| url | https://doi.org/10.1002/acn3.51985 |
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