Elsevier

Academic Pediatrics

Volume 16, Issue 6, August 2016, Pages 594-600
Academic Pediatrics

Family Perspectives–Weight and Obesity, ASD, Hospitalization, Referrals
Family Perspectives on High-Quality Pediatric Subspecialty Referrals

https://doi.org/10.1016/j.acap.2016.05.147Get rights and content

Abstract

Objective

Although children are frequently referred to subspecialist physicians, many inadequacies in referral processes have been identified from physician and system perspectives. Little is known, however, about how to comprehensively measure or improve the quality of the referral systems from a family-centered perspective. To foster family-centered improvements to pediatric subspecialty referrals, we sought to develop a framework for high-quality, patient-centered referrals from the perspectives of patients and their families.

Methods

We used stakeholder-informed qualitative analysis of parent, caregiver, and patient interviews to identify outcomes, processes, and structures of high-quality pediatric subspecialty referrals as perceived by patients and their family members.

Results

We interviewed 21 informants. Informants identified 5 desired outcomes of subspecialty referrals: improved functional status or symptoms; improved long-term outcomes; improved knowledge of their disease; informed expectations; and reduced anxiety about the child's health status. Processes that informants identified as supporting these outcomes centered around 6 key steps in subspecialty referrals, including the referral decision, previsit information transfer, appointment scheduling, subspecialist visit, postvisit information transfer, and ongoing care integration and communication. Health care delivery structures identified by informants as supporting these processes included physical infrastructure, human resources, and information technology systems.

Conclusions

We identified family-centered outcomes, processes, and structures of high-quality pediatric subspecialty referrals. These domains can be used not only to improve measurement of the quality of existing referral systems but also to inform future interventions to improve patient-centered outcomes for children in need of specialty care.

Section snippets

Methods

We examined family experiences of subspecialty referrals though qualitative analysis of family member interviews (including parents, caregivers, and patients) informed by a stakeholder advisory group. Using recommended best practices for engaging stakeholders as research collaborators,14, 15 we assembled a group of 6 individuals representing patients, parents/caregivers, providers, and payers, including individuals who self-identified as living in communities with poor access to pediatric

Results

In total, we conducted 21 interviews, including 19 parents/caregivers (referred to collectively herein as caregivers) whose children ranged in age from 0 to 21 years old (Table 1). In addition to these caregiver interviews, 2 adolescent or young adult children of these caregivers completed interviews. Two-thirds of caregivers identified as white, and one-quarter identified as black. Caregivers reported a median travel time to their pediatric subspecialist of 40 minutes, ranging from 5 to 120

Discussion

Through qualitative interviews with caregivers and patients, we developed a family-centered model of high-quality subspecialty referrals. This conceptual model builds upon previous models for subspecialty referrals2, 9 by emphasizing the outcomes desired by families and patients and the processes and structures that families identified as supporting these outcomes. The model reflects the importance informants placed on aspects of the referral process that physicians and researchers might not

Acknowledgments

The authors gratefully acknowledge the Pediatric Care Delivery stakeholder advisory group, including Pamela DeGeorge, Kathleen Dempsey, Deborah Moss, Amy Philips-Haller, and Mary Ann Rigas, for their invaluable contribution of time, experience, and insight throughout this study. We also appreciate the time of the care coordinators who assisted with recruitment.

Financial disclosure: Supported in part by grants from the Agency for Healthcare Research and Quality (K12HS022989, K.N.R.), the

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    The authors have no conflicts of interest to disclose.

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