Background
Diagnosing and managing pediatric disorders of gut-brain interaction (DGBIs) is challenging for clinicians, patients, and families due to the interplay of complex symptom histories, perceived stigma, and contextual information. Timely access to patients' medical records and data is essential for effective collaborative decision-making and treatment planning. Despite advances in electronic health record (EHR) interoperability and patient portals for collecting information, these existing tools may be inadequate in the care of DGBI patients.
Understanding clinicians' needs
We conducted semi-structured interviews with 13 clinicians and 10 qualitative observations of clinicians within a specialty pediatric gastroenterology division. We inquired about clinicians' EHR use, barriers to accessing and interpreting patient data, and strategies for addressing patient and family needs in GI specialty care. We analyzed data using reflexive thematic analysis to identify common themes among clinicians.
Clinicians identified three primary barriers to effective care for pediatric disorders of gut-brain interaction in their subspecialty context: (1) fragmented, incomplete, and inaccurate patient information across systems and clinicians; (2) time and workflow constraints that limit clinicians' understanding of patients' and families' priorities and care needs, and (3) gaps in understanding among patients and families regarding DGBI diagnosis and management. Existing technologies were often acknowledged as inadequate for supporting the data collection, collaboration, and expectation-setting necessary for pediatric DGBI care.
These findings have been accepted for publication in JMIR. This project was funded by the NASPGHAN Foundation.
Understanding needs of adolescents and families
We conducted semi-structured interviews with 15 adolescents and their parents. Analysis of these data is underway.
This project was funded by a seed grant from the Department of Medical Social Sciences at Feinberg School of Medicine.