title: Family Perspectives on High-Quality Pediatric Subspecialty Referrals.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pa; Children's Hospital of Pittsburgh, Pittsburgh, Pa. Electronic address: Kristin.Ray@chp.edu.
authors.forename: Kristin N
authors.initials: KN
authors.lastname: Ray
authors.affiliation: Department of Critical Care Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pa.
authors.forename: Laura Ellen
authors.initials: LE
authors.lastname: Ashcraft
authors.affiliation: Department of Critical Care Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pa; Department of Health Policy and Management, University of Pittsburgh Graduate School of Public Health, Pittsburgh, Pa.
authors.forename: Jeremy M
authors.initials: JM
authors.lastname: Kahn
authors.affiliation: Department of Health Care Policy and Medicine, Harvard Medical School and RAND Corporation, Boston, Mass.
authors.forename: Ateev
authors.initials: A
authors.lastname: Mehrotra
authors.affiliation: Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pa; Children's Hospital of Pittsburgh, Pittsburgh, Pa.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Miller
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D010290:Parents; D010372:Pediatrics / Q000592:standards*; D036301:Qualitative Research; D011787:Quality of Health Care; D012017:Referral and Consultation / Q000592:standards*; D013038:Specialization; D055815:Young Adult
keywords: consultation; family-centered; outcomes; patient-centered; pediatric; quality; referral; specialty; subspecialty