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Improving communication of diagnostic uncertainty to families of hospitalized children

  • Eleanor E. Young EMAIL logo , Joelle Kane , Kristen Timmons , Jodi Kelley , Philip A. Hagedorn , Patrick W. Brady and Trisha L. Marshall
Published/Copyright: October 26, 2023

Abstract

Objectives

Diagnostic uncertainty is not reliably communicated to patients and caregivers. This study aims to identify barriers and facilitators to effective communication of diagnostic uncertainty, including development of potential tools and strategies for improvement, as perceived by healthcare professionals and caregivers.

Methods

We completed structured interviews with providers and caregivers of hospitalized children with uncertain diagnoses (UD). The interview guides addressed barriers to communication, key components for communication of uncertainty, and qualities of effective communication. The interviews concluded with respondents prioritizing potential interventions to improve communication of uncertainty. Interviews were audio recorded, transcribed, and independently analyzed by two team members to identify common themes.

Results

Ten provider and five caregiver interviews were conducted. Common barriers to communication of uncertainty included time constraints, language barriers, and lack of clear definition of UD. Caregiver suggestions for improvement included sharing expectations of the diagnostic process and use of both written and visual communication tools. Interview respondents favored interventions of a sign summarizing the key components of diagnostic uncertainty for display in patient rooms and a structured diagnostic pause during daily rounds.

Conclusions

We identified several potential interventions that may enhance communication of diagnostic uncertainty and better engage patients and caregivers in the diagnostic process.


Corresponding author: Eleanor E. Young, MD, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229, USA, Phone: +(513) 344-7192, E-mail:

Funding source: DxQI Seed Grant Program, Society to Improve Diagnosis in Medicine in conjunction with the Gordon and Betty Moore Foundation.

Acknowledgments

This work was funded by the Society to Improve Diagnosis in Medicine in conjunction with the Moore Foundation.

  1. Research ethics: Research involving human subjects complied with all relevant national regulations, institutional policies and is in accordance with the tenets of the Helsinki Declaration (as revised in 2013), and has been approved by the authors’ Institutional Review Board (IRB00000231).

  2. Informed consent: Informed consent was obtained from all individuals included in this study.

  3. Author contributions: All authors have accepted responsibility for the entire content of this manuscript and approved its submission.

  4. Competing interests: The authors state no conflict of interest.

  5. Research funding: Funding was attained by receipt of the DxQI grant through the Society to Improve Diagnosis in Medicine.

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Received: 2023-07-12
Accepted: 2023-10-03
Published Online: 2023-10-26

© 2023 Walter de Gruyter GmbH, Berlin/Boston

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