153 - Clinician-Caregiver Communication Gaps in the Diagnostic Journey for Children with Medical Complexity
Sunday, April 26, 2026
9:30am - 11:30am ET
Publication Number: 3147.153
Tamaki Hashiramoto, Boston Children's Hospital, Boston, MA, United States; Katherine Melton, Hasbro Children's Hospital at Rhode Island Hospital, BOston, MA, United States; Christina L.. Cifra, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States; Kimberly Asitimbay, Boston Children's Hospital, West Yarmouth, MA, United States; Samira Ahmed, Boston Children's Hospital, Winter Haven, FL, United States; Alexander Fidel, Children's Hospital of Philadelphia, Brooklyn, NY, United States; Ruby Hyland-Brown, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Brynn Telenko, Boston Children's Hospital, West Chester, PA, United States; Ellen Lipstein, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Ken Catchpole, Medical University of South Carolina, Charleston, SC, United States; Alyna T.. Chien, Boston Children's Hospital, Boston, MA, United States; Alisa Khan, Boston Children's Hospital and Harvard Medical School, Boston, MA, United States; Patrick W. Brady, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Trisha L. Marshall, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Irit R. Rasooly, Childrens Hospital of Philadelphia, Bala Cynwyd, PA, United States; Nolan Joyce, Boston Childrens Hospital, East Bridgewater, MA, United States; Christopher P. Landrigan, Boston Children's Hospital, Boston, MA, United States; Kathleen E. Walsh, Boston Children's Hospital, boston, MA, United States
Clinical Research Assistant Boston Children's Hospital Boston, Massachusetts, United States
Background: Diagnostic harm is common across clinical settings. However, the diagnostic process for children with medical complexity in ambulatory pediatrics has not been well characterized. Objective: To examine gaps in communication and understanding between caregivers and clinicians about the diagnostic process for children with medical complexity in ambulatory pediatrics. Design/Methods: Data were collected via individual semi-structured interviews with clinicians and caregivers following a problem-focused visit for children with medical complexity in general primary care and complex care clinics at three academic pediatric healthcare systems. We purposively sampled by race, language, and insurance status (Table 1). Interviews were audio-recorded and transcribed. We used the novel qualitative method of dyadic interview analysis to compare and contrast caregiver and clinician responses to similar interview questions about primary/working diagnosis, next steps in the diagnostic process, red flags (return precautions), and diagnostic uncertainty. Using REDCap, clinician and caregiver responses to four selected questions were extracted and rated by two reviewers as concordant (similar), discordant (different), or missing pieces (unique information shared by only one respondent). Coding discrepancies were resolved at consensus meetings. Results: In 25 pairs of interviews, providers and caregivers had the following concordant responses around: diagnosis (52%), next steps (23%), red flags (52%), and uncertainty (50%) (Table 2&3). Only one dyad had concordant responses across all four questions, in which the clinician and caregiver aligned on every response. Caregivers often perceived the provider as being “100% confident” in a diagnosis, while providers shared that they actually had doubts or uncertainty about the diagnosis. Caregivers viewed their child’s health more broadly, while clinician responses tended to focus more on the details of presenting problems. Important next steps or return precautions mentioned by the clinician were sometimes not reported by caregivers.
Conclusion(s): We observed gaps in diagnosis-specific communication between clinicians and caregivers of children with medical complexity seen at outpatient care visits. Further work is needed to evaluate diagnosis communication, its effectiveness, and how communication affects patient care and outcomes.
