User-centered design of a longitudinal care plan for children with medical complexity

Desai, Arti D.; Wang, Grace; Wignall, Julia; Kinard, Dylan; Singh, Vidhi; Adams, Sherri; Pratt, Wanda

doi:10.1093/jamia/ocaa193

Cited by 14 publications

(11 citation statements)

References 27 publications

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“…Indeed, researchers explained that when mental models of a specific topic do not align, knowledge transfer becomes challenging as “neither group can conceptualize the others' viewpoint” ( 48 ). During the knowledge transfer process, it is important to use terminology known and understood by families ( 74 , 75 ). A successful knowledge transfer process involves information to be collected, evaluated, and organized, then shared using relevant language.…”

Section: Resultsmentioning

confidence: 99%

“…Research on care coordination correlates the use of: ( A) concept mapping and ( B) care mapping to an increased level of communication between healthcare providers and caregivers, as well as between healthcare providers themselves ( 19 , 74 , 75 , 83 ). Furthermore, in healthcare mapping can promote health literacy, build and organize an individual's mental model, and enhance knowledge transfer ( 78 , 84 ).…”

Section: Resultsmentioning

confidence: 99%

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How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

Kelm

Bolduc

2021

Front. Psychiatry

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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).

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

Kelm

Bolduc

2021

Front. Psychiatry

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“…These findings with regards to health information align with findings related to user centered design practices for developing mHealth apps. Desai et al (2020) outlined six design preferences for mHealth apps [ 68 ]. Of these six design elements, using a table layout, a problem-based organization system, and linking content between different areas will help address these caregiver information needs [ 68 ].…”

Section: Discussionmentioning

confidence: 99%

“…Desai et al (2020) outlined six design preferences for mHealth apps [ 68 ]. Of these six design elements, using a table layout, a problem-based organization system, and linking content between different areas will help address these caregiver information needs [ 68 ]. Information within an mHealth app can be presented in a table format, as well as linking pertinent topics together for caregivers.…”

Section: Discussionmentioning

confidence: 99%

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

et al. 2021

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Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families’ care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families’ recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

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“…PGHD, such as medical diaries used by families to keep track of health information and events at home, has primarily been collected through mobile devices 10–12 and is used to support clinical decision-making 13 and improve quality of life. 14 In addition, communication and data-sharing technologies, such as patient portals, 15 cloud-based care plan sharing, and other approaches, 16 , 17 have been leveraged to enhance care coordination and management for children with chronic diseases. As mobile devices become more ubiquitous, care coordination and communications are increasingly supported by mobile health technologies.…”

Section: Introductionmentioning

confidence: 99%

A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management: a cystic fibrosis case study

et al. 2021

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Objectives Patient-generated health data (PGHD) are important for tracking and monitoring out of clinic health events and supporting shared clinical decisions. Unstructured text as PGHD (eg, medical diary notes and transcriptions) may encapsulate rich information through narratives which can be critical to better understand a patient’s condition. We propose a natural language processing (NLP) supported data synthesis pipeline for unstructured PGHD, focusing on children with special healthcare needs (CSHCN), and demonstrate it with a case study on cystic fibrosis (CF). Materials and Methods The proposed unstructured data synthesis and information extraction pipeline extract a broad range of health information by combining rule-based approaches with pretrained deep-learning models. Particularly, we build upon the scispaCy biomedical model suite, leveraging its named entity recognition capabilities to identify and link clinically relevant entities to established ontologies such as Systematized Nomenclature of Medicine (SNOMED) and RXNORM. We then use scispaCy’s syntax (grammar) parsing tools to retrieve phrases associated with the entities in medication, dose, therapies, symptoms, bowel movements, and nutrition ontological categories. The pipeline is illustrated and tested with simulated CF patient notes. Results The proposed hybrid deep-learning rule-based approach can operate over a variety of natural language note types and allow customization for a given patient or cohort. Viable information was successfully extracted from simulated CF notes. This hybrid pipeline is robust to misspellings and varied word representations and can be tailored to accommodate the needs of a specific patient, cohort, or clinician. Discussion The NLP pipeline can extract predefined or ontology-based entities from free-text PGHD, aiming to facilitate remote care and improve chronic disease management. Our implementation makes use of open source models, allowing for this solution to be easily replicated and integrated in different health systems. Outside of the clinic, the use of the NLP pipeline may increase the amount of clinical data recorded by families of CSHCN and ease the process to identify health events from the notes. Similarly, care coordinators, nurses and clinicians would be able to track adherence with medications, identify symptoms, and effectively intervene to improve clinical care. Furthermore, visualization tools can be applied to digest the structured data produced by the pipeline in support of the decision-making process for a patient, caregiver, or provider. Conclusion Our study demonstrated that an NLP pipeline can be used to create an automated analysis and reporting mechanism for unstructured PGHD. Further studies are suggested with real-world data to assess pipeline performance and further implications.

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User-centered design of a longitudinal care plan for children with medical complexity

Cited by 14 publications

References 27 publications

How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management: a cystic fibrosis case study

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