The challenges of caring for children with complex health needs, such as intellectual disability (ID) and autism spectrum disorder (ASD), are multiple and experienced by both caregivers and health professionals. Fragile X syndrome (FXS) is the most common single gene cause of ID and ASD, and provides a pertinent model to understand these complexities of care, as well as the communication challenges experienced between caregivers and healthcare professionals. In recent years both caregivers and healthcare professionals have recognized the need for enhancing communication both in clinical and research settings. Knowledge mapping has emerged as a tool to support quality communication between team participants. Here we review how differences in mental models, as well as challenges related to health literacy and knowledge transfer can have an impact on communication. Next, we present different knowledge mapping approaches used in complex situations, with a focus on concept maps and care maps. Finally, we highlight the potential benefits and limitations of mapping to improve communication issues related to caring for individuals with FXS and potentially other neurodevelopmental disorders (NDDs).
Background Understanding how individuals think about a topic, known as the mental model, can significantly improve communication, especially in the medical domain where emotions and implications are high. Neurodevelopmental disorders (NDDs) represent a group of diagnoses, affecting up to 18% of the global population, involving differences in the development of cognitive or social functions. In this study, we focus on 2 NDDs, attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD), which involve multiple symptoms and interventions requiring interactions between 2 important stakeholders: parents and health professionals. There is a gap in our understanding of differences between mental models for each stakeholder, making communication between stakeholders more difficult than it could be. Objective We aim to build knowledge graphs (KGs) from web-based information relevant to each stakeholder as proxies of mental models. These KGs will accelerate the identification of shared and divergent concerns between stakeholders. The developed KGs can help improve knowledge mobilization, communication, and care for individuals with ADHD and ASD. Methods We created 2 data sets by collecting the posts from web-based forums and PubMed abstracts related to ADHD and ASD. We utilized the Unified Medical Language System (UMLS) to detect biomedical concepts and applied Positive Pointwise Mutual Information followed by truncated Singular Value Decomposition to obtain corpus-based concept embeddings for each data set. Each data set is represented as a KG using a property graph model. Semantic relatedness between concepts is calculated to rank the relation strength of concepts and stored in the KG as relation weights. UMLS disorder-relevant semantic types are used to provide additional categorical information about each concept’s domain. Results The developed KGs contain concepts from both data sets, with node sizes representing the co-occurrence frequency of concepts and edge sizes representing relevance between concepts. ADHD- and ASD-related concepts from different semantic types shows diverse areas of concerns and complex needs of the conditions. KG identifies converging and diverging concepts between health professionals literature (PubMed) and parental concerns (web-based forums), which may correspond to the differences between mental models for each stakeholder. Conclusions We show for the first time that generating KGs from web-based data can capture the complex needs of families dealing with ADHD or ASD. Moreover, we showed points of convergence between families and health professionals’ KGs. Natural language processing–based KG provides access to a large sample size, which is often a limiting factor for traditional in-person mental model mapping. Our work offers a high throughput access to mental model maps, which could be used for further in-person validation, knowledge mobilization projects, and basis for communication about potential blind spots from stakeholders in interactions about NDDs. Future research will be needed to identify how concepts could interact together differently for each stakeholder.
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