ArticleJournal of the American Medical Informatics Association : JAMIA2017
Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN).
Article in Journal of the American Medical Informatics Association : JAMIA, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
28 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Commonality of 25 component themes of integrated care for children: rapid review of 170 models.BMC health services research · 2025Pooled it
- Machine learning approach to analyzing complex care coordination patterns for medically complex children.BMC medical informatics and decision making · 2026Article
- Amplifying the Voices of Parents From Underserved Communities in Digital Health for Children With Medical Complexity: Interview Study Among Parents.JMIR pediatrics and parenting · 2026Article
- Article
- Article
- Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.Orphanet journal of rare diseases · 2023Article
- Extracting Medical Information From Free-Text and Unstructured Patient-Generated Health Data Using Natural Language Processing Methods: Feasibility Study With Real-world Data.JMIR formative research · 2023Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- User Requirements for Comanaged Digital Health and Care: Review.Journal of medical Internet research · 2022Review
- Development of models of care coordination for rare conditions: a qualitative study.Orphanet journal of rare diseases · 2022Article
- "Hey Siri, Help Me Take Care of My Child": A Feasibility Study With Caregivers of Children With Special Healthcare Needs Using Voice Interaction and Automatic Speech Recognition in Remote Care Management.Frontiers in public health · 2022Article
- Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications.Frontiers in digital health · 2022Review
- Article
- Feasibility of a Voice-Enabled Medical Diary App (SpeakHealth) for Caregivers of Children With Special Health Care Needs and Health Care Providers: Mixed Methods Study.JMIR formative research · 2021Article
- A scoping review of qualitative research in JAMIA: past contributions and opportunities for future work.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- An implementation model for managing cloud-based longitudinal care plans for children with medical complexity.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- User-centered design of a longitudinal care plan for children with medical complexity.Journal of the American Medical Informatics Association : JAMIA · 2020Article
- Identifying nurse managers' essential information needs in daily unit operation in perioperative settings.Nursing open · 2020Article
- Capturing At-Home Health and Care Information for Children With Medical Complexity Using Voice Interactive Technologies: Multi-Stakeholder Viewpoint.Journal of medical Internet research · 2020Article
- Why Should I Trust You? Supporting the Sharing of Health Data in the Interprofessional Space of Child Development.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
objectivesIdentify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN). MATERIALS AND
methodsWe conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes.
resultsThe Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes. DISCUSSION AND
conclusionCaring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.