Recommendations for Social Skills End Points for Clinical Trials in Neurofibromatosis Type 1. Neurology 2021 Aug 17;97(7 Suppl 1):S73-S80
Date
07/08/2021Pubmed ID
34230205Pubmed Central ID
PMC8594002DOI
10.1212/WNL.0000000000012422Scopus ID
2-s2.0-85114522669 (requires institutional sign-in at Scopus site) 5 CitationsAbstract
OBJECTIVE: To review parent-report social skills measures to identify and recommend consensus outcomes for use in clinical trials of social deficit in children and adolescents (ages 6-18 years) with neurofibromatosis type 1 (NF1).
METHODS: Searches were conducted via PubMed and ClinicalTrials.gov to identity social skills outcome measures with English language versions used in clinical trials in the past 5 years with populations with known social skills deficits, including attention-deficit/hyperactivity disorder and autism spectrum disorder (ASD). Measures were rated by the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) Neurocognitive Committee on patient characteristics, use in published studies, domains assessed, availability of standard scores, psychometric properties, and feasibility to determine their appropriateness for use in NF1 clinical trials.
RESULTS: Two measures were ultimately recommended by the committee: the Social Responsiveness Scale-2 (SRS-2) and the Social Skills Improvement System-Rating Scale (SSIS-RS).
CONCLUSIONS: Each of the 2 measures assesses different aspects of social functioning. The SSIS-RS is appropriate for studies focused on broader social functioning; the SRS-2 is best for studies targeting problematic social behaviors associated with ASD. Researchers will need to consider the goals of their study when choosing a measure, and specific recommendations for their use are provided.
Author List
Janusz JA, Klein-Tasman BP, Payne JM, Wolters PL, Thompson HL, Martin S, de Blank P, Ullrich N, Del Castillo A, Hussey M, Hardy KK, Haebich K, Rosser T, Toledo-Tamula MA, Walsh KS, REiNS International CollaborationAuthor
Bonita Klein-Tasman BA,MA,PhD Professor in the Psychology department at University of Wisconsin - MilwaukeeMESH terms used to index this publication - Major topics in bold
AgedAttention Deficit Disorder with Hyperactivity
Autism Spectrum Disorder
Female
Humans
Language
Male
Neurilemmoma
Neurofibromatoses
Neurofibromatosis 1
Skin Neoplasms
Social Behavior
Social Skills