Preliminary reliability and validity of a battery for assessing functional skills in children with Sturge-Weber syndrome

Teressa Garcia Reidy; Stacy J. Suskauer; Cathy D. Bachur; Charles E. McCulloch; Anne M. Comi

doi:10.1007/s00381-014-2573-6

Preliminary reliability and validity of a battery for assessing functional skills in children with Sturge-Weber syndrome

Teressa Garcia Reidy, Stacy J. Suskauer, Cathy D. Bachur, Charles E. McCulloch, Anne M. Comi

Kennedy Krieger Institute

Research output: Contribution to journal › Article › peer-review

3 Scopus citations

Abstract

Methods: Ten children were evaluated twice on the same day using a series of functional outcome measures selected for sensitivity to the range of age and function of children with SWS: Modified Rankin Scale, Pediatric Evaluation of Disability Index, Modified House Functional Classification, and a modified version of the Erhardt Developmental Prehension Assessment. Inter-rater reliability was calculated, and criterion validity was explored through correlations with the Sturge-Weber Syndrome-Neurological Rating Score (SWS-NRS).

Results: Inter-rater reliability was high across all measures. Correlations were identified between the SWS-NRS and the study measures.

Conclusions: The proposed battery of functional outcome measures captures child’s functioning at the levels of impairment, activity and participation and is robust to evaluation by different raters and across sessions on the same day. This battery is expected to be sensitive to treatment-related changes in qualitative patterns of hand use, functional skills, and/or change in independence in daily living.

Purpose: The purpose of this study was to evaluate inter-rater reliability and validity of a proposed functional outcome battery for clinical trials in children with Sturge-Weber syndrome (SWS).

Original language	English (US)
Pages (from-to)	2027-2036
Number of pages	10
Journal	Child's Nervous System
Volume	30
Issue number	12
DOIs	https://doi.org/10.1007/s00381-014-2573-6
State	Published - Nov 7 2014

Keywords

Child
Function
Outcome
Sturge-Weber syndrome

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health
Clinical Neurology

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10.1007/s00381-014-2573-6

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title = "Preliminary reliability and validity of a battery for assessing functional skills in children with Sturge-Weber syndrome",

abstract = "Methods: Ten children were evaluated twice on the same day using a series of functional outcome measures selected for sensitivity to the range of age and function of children with SWS: Modified Rankin Scale, Pediatric Evaluation of Disability Index, Modified House Functional Classification, and a modified version of the Erhardt Developmental Prehension Assessment. Inter-rater reliability was calculated, and criterion validity was explored through correlations with the Sturge-Weber Syndrome-Neurological Rating Score (SWS-NRS).Results: Inter-rater reliability was high across all measures. Correlations were identified between the SWS-NRS and the study measures.Conclusions: The proposed battery of functional outcome measures captures child{\textquoteright}s functioning at the levels of impairment, activity and participation and is robust to evaluation by different raters and across sessions on the same day. This battery is expected to be sensitive to treatment-related changes in qualitative patterns of hand use, functional skills, and/or change in independence in daily living.Purpose: The purpose of this study was to evaluate inter-rater reliability and validity of a proposed functional outcome battery for clinical trials in children with Sturge-Weber syndrome (SWS).",

keywords = "Child, Function, Outcome, Sturge-Weber syndrome",

author = "Reidy, {Teressa Garcia} and Suskauer, {Stacy J.} and Bachur, {Cathy D.} and McCulloch, {Charles E.} and Comi, {Anne M.}",

note = "Funding Information: Acknowledgments This work was supported by grants from the National Institute of Neurological Disorders and Stroke (NINDS) (National Institutes of Health [NIH] U54NS065705) (to Dr. Comi) and from Hunter{\textquoteright}s Dream for a Cure Foundation (to Dr. Comi), Celebrate Cure Foundation (to Dr. Comi), and Faneca 66 Foundation (to Dr. Comi). The Brain Vascular Malformation Consortium (U54NS065705) is a part of the NIH Rare Disease Clinical Research Network, supported through the collaboration between the NIH Office of Rare Diseases Research at the National Center for Advancing Translational Science and the NINDS. Publisher Copyright: {\textcopyright} 2014, Springer-Verlag Berlin Heidelberg.",

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doi = "10.1007/s00381-014-2573-6",

language = "English (US)",

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AU - Reidy, Teressa Garcia

AU - Suskauer, Stacy J.

AU - Bachur, Cathy D.

AU - McCulloch, Charles E.

AU - Comi, Anne M.

N1 - Funding Information: Acknowledgments This work was supported by grants from the National Institute of Neurological Disorders and Stroke (NINDS) (National Institutes of Health [NIH] U54NS065705) (to Dr. Comi) and from Hunter’s Dream for a Cure Foundation (to Dr. Comi), Celebrate Cure Foundation (to Dr. Comi), and Faneca 66 Foundation (to Dr. Comi). The Brain Vascular Malformation Consortium (U54NS065705) is a part of the NIH Rare Disease Clinical Research Network, supported through the collaboration between the NIH Office of Rare Diseases Research at the National Center for Advancing Translational Science and the NINDS. Publisher Copyright: © 2014, Springer-Verlag Berlin Heidelberg.

PY - 2014/11/7

Y1 - 2014/11/7

N2 - Methods: Ten children were evaluated twice on the same day using a series of functional outcome measures selected for sensitivity to the range of age and function of children with SWS: Modified Rankin Scale, Pediatric Evaluation of Disability Index, Modified House Functional Classification, and a modified version of the Erhardt Developmental Prehension Assessment. Inter-rater reliability was calculated, and criterion validity was explored through correlations with the Sturge-Weber Syndrome-Neurological Rating Score (SWS-NRS).Results: Inter-rater reliability was high across all measures. Correlations were identified between the SWS-NRS and the study measures.Conclusions: The proposed battery of functional outcome measures captures child’s functioning at the levels of impairment, activity and participation and is robust to evaluation by different raters and across sessions on the same day. This battery is expected to be sensitive to treatment-related changes in qualitative patterns of hand use, functional skills, and/or change in independence in daily living.Purpose: The purpose of this study was to evaluate inter-rater reliability and validity of a proposed functional outcome battery for clinical trials in children with Sturge-Weber syndrome (SWS).

AB - Methods: Ten children were evaluated twice on the same day using a series of functional outcome measures selected for sensitivity to the range of age and function of children with SWS: Modified Rankin Scale, Pediatric Evaluation of Disability Index, Modified House Functional Classification, and a modified version of the Erhardt Developmental Prehension Assessment. Inter-rater reliability was calculated, and criterion validity was explored through correlations with the Sturge-Weber Syndrome-Neurological Rating Score (SWS-NRS).Results: Inter-rater reliability was high across all measures. Correlations were identified between the SWS-NRS and the study measures.Conclusions: The proposed battery of functional outcome measures captures child’s functioning at the levels of impairment, activity and participation and is robust to evaluation by different raters and across sessions on the same day. This battery is expected to be sensitive to treatment-related changes in qualitative patterns of hand use, functional skills, and/or change in independence in daily living.Purpose: The purpose of this study was to evaluate inter-rater reliability and validity of a proposed functional outcome battery for clinical trials in children with Sturge-Weber syndrome (SWS).

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Preliminary reliability and validity of a battery for assessing functional skills in children with Sturge-Weber syndrome

Abstract

Keywords

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