Evidence map›Paper›PMID 39439575›Full record

ArticleNeurology. Clinical practice2025

Assessing Communication Impairments in a Rare Neurodevelopmental Disorder: The

Anne T Berg, Amanda N Nili, Lindsey Evans, Katherine C Paltell, Ariela J E Kaiser, Erica L Anderson, Shawn M Egan, Aaron J Kaat, Gerry Nesbitt, Leah S Myers

Abstract read
In one paragraph

Article in Neurology. Clinical practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed.

  1. Review
  2. Article
  3. Article
  4. Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  5. Article
  6. Article
  7. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Anne T BergFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0002-0298-5523
Amanda N NiliFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0001-7547-6415
Lindsey EvansFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0002-8948-0375
Katherine C PaltellFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0002-1567-6463
Ariela J E KaiserFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0002-8726-4126
Erica L AndersonFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0009-0003-7547-2643
Shawn M EganFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0009-0006-6422-809X
Aaron J KaatFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0001-8147-1899
Gerry NesbittFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0000-0003-1065-9266
Leah S MyersFamilieSCN2A Foundation (ATB, SME, LSM), Longmeadow, MA; Department of Medical and Social Sciences (ANN, AJK), Northwestern University Feinberg School of Medicine; Department of Psychology (LE), Illinois Institute of Technology; Department of Psychology (KCP, A.J. Kaiser AJEK), University of Illinois at Chicago; Institute for Innovations in Developmental Sciences (ELA), Northwestern University, Chicago, IL; and CLIRINX (GN), Dublin, Ireland.ORCID https://orcid.org/0009-0009-7756-7893

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background and Objectives: Methods: Parents of Results: Of 65 participants (28 females, median age 6.4 years, IQR 4.1-10.5), 56 (86%) had epilepsy. Eleven (17%) used speech as their primary communication mode; 84% were considered ineffective communicators. The mean Vineland composite standardized score (SS) was 34 (IQR 26-46). Cross-sectionally, standardized scores decreased with increasing age. There were substantial floor effects for receptive (75%) and expressive (83%) communication. SSs discriminated poorly between verbal vs nonverbal and communicative vs noncommunicative participants and were not sensitive to features reflecting epilepsy severity (e.g., epileptic spasms and number of current medications). By contrast, Vineland growth scale value (GSV) and ABAS, Matrix, and CSBS raw scores had minimal floor effects; most increased with age. These alternative scores distinguished clearly between participants with different levels of communication and were sensitive to aspects of epilepsy severity. Longitudinally, SSs decreased, but other scores remained relatively stable over a year. Discussion:

Identifiers

PMID39439575
PMCPMC11492899

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.