Evidence map›Paper›PMID 41114730›Full record

ArticleJournal of child psychology and psychiatry, and allied disciplines2026

The spectrum of communication abilities in children with 12 rare neurodevelopmental disorders: a qualitative study with caregivers.

Christina K Zigler, Molly McFatrich, Nicole Lucas, Kate Plyler, Leslie Zapata-Leiva, Kelly Gordon, Harrison N Jones, Li Lin, Jennifer Kern, Abigail Radar and 22 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of child psychology and psychiatry, and allied disciplines, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

32 authors.

Christina K ZiglerDepartment of Physical Medicine & Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.ORCID 0000-0002-8996-7757
Molly McFatrichDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Nicole LucasDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Kate PlylerDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Leslie Zapata-LeivaCenter for Communication Science, RTI International, Research Triangle Park, NC, USA.
Kelly GordonDuke Health, Durham, NC, USA.
Harrison N JonesDepartment of Head and Neck Surgery & Communication Sciences, Duke University School of Medicine, Durham, NC, USA.
Li LinDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Jennifer KernDuke Health, Durham, NC, USA.
Abigail RadarDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Dandan ChenDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Elika BergelsonDepartment of Psychology, Harvard University, Cambridge, MA, USA.
Kate StillPhelan-McDermid Syndrome Foundation, Laurel, FL, USA.
Brigette HingerNR2F1 Foundation, Pflugerville, TX, USA.
Christal G DelagrammatikasMalan Syndrome Foundation, Old Bridge, NJ, USA.
Sarah PoliquinCOMBINEDBrain, Brentwood, TN, USA.
Brittany P ShortCOMBINEDBrain, Brentwood, TN, USA.
Liz Marfia-AshGRIN2B Foundation, Niles, IL, USA.
Kimberly StephensMuenzer MPS Research and Treatment Center at UNC, Chapel Hill, NC, USA.
Haley O OylerSETBP1 Society, Austin, TX, USA.
J Michael GragliaSYNGAP Research Fund, San Diego, CA, USA.
Kali WorthSYNGAP Research Fund, San Diego, CA, USA.
Charlene Son RigbySTXBP1 Foundation, Holly Springs, NC, USA.
James R GossSTXBP1 Foundation, Holly Springs, NC, USA.
Bo BigelowFoundation for Hao-Fountain Syndrome, Falmouth, ME, USA.
Geraldine BlissCureSHANK, Los Angeles, CA, USA.
Karen BeattyProject Alive, Davenport, FL, USA.
Leah Schust MyersFamilieSCN2A Foundation, Gettysburg, PA, USA.
Melissa ThelenNR2F1 Foundation, Pflugerville, TX, USA.
Nuala SummerfieldThe Schinzel-Giedion Syndrome Foundation, West Sussex, UK.
Terry Jo BichellCOMBINEDBrain, Brentwood, TN, USA.
Bryce B ReeveDepartment of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.

Funding

FDA HHS UG3 FD007304U.S. Food and Drug Administration 1UG3FD007304-01
6 · The paper itself

Abstract

backgroundOur aim was to update an existing model of communication ability for children with rare neurodevelopmental disorders (NDDs) by centring caregiver and family perspectives. This project is part of a larger initiative to improve the measurement of communication ability for these children in the context of clinical trials.

methodsWe conducted concept elicitation interviews with purposively selected clinical experts and caregivers of children with 12 NDDs, focusing on a broad definition of communication ability based on the Observer-Reported Communication Ability (ORCA) measure, which is inclusive of different communication modalities and covers expressive, receptive and pragmatic communication concepts. Content-based and thematic analysis was performed on the qualitative data.

resultsAltogether, 115 interviews were conducted with caregivers across the 12 NDDs and with 9 clinicians. Commonly mentioned concepts across NDDs included requesting an object, refusing an object, responding to familiar directions and seeking attention. There was notable heterogeneity within and across NDD groups in terms of the specific communication behaviours described for each communication concept. One common example was requesting; children used verbal speech, gestures, sign language, eye gaze, body movements and augmentative and assistive communication to ask for what they wanted. Novel communication concepts identified that were not part of the existing model were (1) feelings, emotions, and bodily sensations, (2) commenting on likes and dislikes, and (3) communicating and understanding humour.

conclusionsCaregivers offered a detailed and nuanced picture of their child's day-to-day communication. There was a considerable overlap between the communication concepts discussed by caregivers in the interviews and the existing conceptual model of communication ability. Some newly identified concepts underscore the need for further adaptation of the model and subsequent validation of any clinical outcome assessment before communication ability can be confidently measured for these individuals in clinical trials.

Indexed as

CaregiversCommunicationCommunication DisordersNeurodevelopmental DisordersRare DiseasesAdolescentAdultChildChild, PreschoolFemaleHumansMaleQualitative Researchbehavioural measurescaregiverCommunicationnon‐verbal communicationqualitative methods

Identifiers

PMID41114730
PMCPMC13102052

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.