The spectrum of communication abilities in children with 12 rare neurodevelopmental disorders: a qualitative study
Christina K Zigler1, Molly McFatrich2, Nicole Lucas2
1Department of Physical Medicine & Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.
Insights
Caregiver input updated a communication model for children with rare neurodevelopmental disorders (NDDs). New concepts like emotions and humor highlight the need for model adaptation in clinical trials.
Area of Science:
- Pediatric communication research
- Neurodevelopmental disorders
- Clinical trial methodology
Background:
- Improving communication ability measurement in children with rare neurodevelopmental disorders (NDDs) is crucial for clinical trials.
- Existing models require updates to fully capture the communication spectrum in NDDs.
- Centering caregiver and family perspectives is key to enhancing communication assessment.
Purpose of the Study:
- To update the communication ability model for children with rare NDDs.
- Incorporate caregiver and family insights into the existing conceptual framework.
- Enhance the measurement of communication ability for NDD clinical trials.
Main Methods:
- Conducted concept elicitation interviews with 115 caregivers and 9 clinical experts across 12 NDDs.
- Utilized a broad definition of communication ability encompassing multiple modalities and concepts.
- Performed content-based and thematic analysis on qualitative interview data.
Main Results:
- Identified common communication concepts such as requesting, refusing, responding to directions, and seeking attention.
- Observed significant heterogeneity in communication behaviors within and across NDD groups.
- Discovered novel concepts including communicating emotions, likes/dislikes, and humor.
Conclusions:
- Caregiver interviews provided a nuanced understanding of daily communication in children with NDDs.
- While overlap exists with current models, new concepts necessitate model adaptation.
- Further validation of clinical outcome assessments is required for accurate communication measurement in NDD trials.
Background:
Our 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.
Methods:
We 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.
Results:
Altogether, 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.
Conclusions:
Caregivers 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.
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