Improving Emergency Care for Children With Medical Complexity: Parent and Physicians’ Perspectives

Published:September 15, 2020DOI:



      Children with medical complexity (CMC) have high rates of emergency department (ED) utilization, but little evidence exists on the perceptions of parents and pediatric emergency medicine (PEM) physicians about emergency care. We sought to explore parent and PEM physicians’ perspectives about 1) ED care for CMC, and 2) how emergency care can be improved.


      We performed semistructured interviews with parents and PEM physicians at a single academic, children's hospital. English-speaking parents were selected utilizing a standard definition of CMC during an ED visit in which their child was admitted to the hospital. All PEM physicians were eligible. We developed separate interview guides utilizing open-ended questions. The trained study team developed and modified a coding tree through an iterative process, double-coded transcripts, monitored inter-rater reliability to ensure adherence, and performed thematic analysis.


      Twenty interviews of parents of CMC and 16 of PEM physicians were necessary for saturation. Parents identified specific challenges related to ED care of their children involving time, information gathering, logistics/convenience, and multifaceted communication between health teams and parents. PEM physicians identified time, data accessibility and availability, and communication as inter-related challenges in caring for CMC in the ED. Suggestions reflected potential solutions to the challenges identified.


      Time, data, and communication challenges were the main focus for both parents and PEM physicians, and suggestions mirrored these challenges. Further research and quality improvement efforts to better characterize and mitigate the identified challenges could be of value for this vulnerable population.


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        • Kuo DZ
        • Melguizo-Castro M
        • Goudie A
        • et al.
        Variation in child health care utilization by medical complexity.
        Matern Child Health J. 2015; 19: 40-48
        • Agrawal R
        • Hall M
        • Cohen E
        • et al.
        Trends in health care spending for children in Medicaid with high resource use.
        Pediatrics. 2016; 138e20160682
        • Cohen E
        • Berry JG
        • Camacho X
        • et al.
        Patterns and costs of health care use of children with medical complexity.
        Pediatrics. 2012; 130: e1463-e1470
        • O'Mahony L
        • O'Mahony DS
        • Simon TD
        • et al.
        Medical complexity and pediatric emergency department and inpatient utilization.
        Pediatrics. 2013; 131: e559-e565
        • Akenroye AT
        • Thurm CW
        • Neuman MI
        • et al.
        Prevalence and predictors of return visits to pediatric emergency departments.
        J Hosp Med. 2014; 9: 779-787
        • Berry JG
        • Rodean J
        • Hall M
        • et al.
        Impact of chronic conditions on emergency department visits of children using Medicaid.
        J Pediatr. 2017; 182: 267-274
        • Coller RJ
        • Rodean J
        • Linares DE
        • et al.
        Variation in hospitalization rates following emergency department visits in children with medical complexity.
        J Pediatr. 2019;
        • Cohen E
        • Jovcevska V
        • Mahant S
        Hospital-based comprehensive care for children and youth with special health care needs (CYSHCN): a systematic review.
        Paediatr Child Health. 2017; 14: 28A
        • Simon TD
        • Berry J
        • Feudtner C
        • et al.
        Children with complex chronic conditions in inpatient hospital settings in the United States.
        Pediatrics. 2010; 126: 647-655
        • Berry JG
        • Bloom S
        • Foley S
        • et al.
        Health inequity in children and youth with chronic health conditions.
        Pediatrics. 2010; 126: S111-S119
        • Kelly A
        • Golnik A
        • Cady R
        A medical home center: specializing in the care of children with special health care needs of high intensity.
        Matern Child Health J. 2008; 12: 633-640
        • Kuo DZ
        • Cohen E
        • Agrawal R
        • et al.
        A national profile of caregiver challenges among more medically complex children with special health care needs.
        JAMA Pediatr. 2011; 165: 1020-1026
        • Cohen E
        • Friedman J
        • Nicholas DB
        • et al.
        A home for medically complex children: the role of hospital programs.
        J Healthc Qual. 2008; 30: 7-15
        • Javalkar K
        • Rak E
        • Phillips A
        • et al.
        Predictors of caregiver burden among mothers of children with chronic conditions.
        Children. 2017; 4: 39
        • Turchi RM
        • Antonelli RC
        • Norwood KW
        • et al.
        Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems.
        Pediatrics. 2014; 133
        • Antonelli RC
        • Antonelli DM
        Providing a medical home: the cost of care coordination services in a community-based, general pediatric practice.
        Pediatrics. 2004; 113: 1522-1528
        • Feinstein JA
        • Feudtner C
        • Kempe A
        Adverse drug event-related emergency department visits associated with complex chronic conditions.
        Pediatrics. 2014;
        • Kuo DZ
        • Houtrow AJ
        Recognition and management of medical complexity.
        Pediatrics. 2016; 138e20163021
        • Pulcini CD
        • Rubin DM
        Flipping the script on emergency care for children with medical complexity.
        Pediatrics. 2019;
        • Abraham G
        • Fehr J
        • Ahmad F
        • et al.
        Emergency information forms for children with medical complexity: a simulation study.
        Pediatrics. 2016; 138e20160847
        • Mosquera RA
        • Avritscher EBC
        • Samuels CL
        • et al.
        Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial.
        JAMA. 2014; 312: 2640-2648
        • Graham RJ
        • McManus ML
        • Rodday AM
        • et al.
        Chronic respiratory failure: utilization of a pediatric specialty integrated care program.
        Healthc (Amst). 2017; 5: 23-28
        • Larson IA
        • Hoffman A
        • Artman M
        Maximizing health outcomes in a medical home for children with medical complexity: the beacon program.
        J Pediatr. 2017; 183: 4-5
        • Meier JD
        • Valentine KJ
        • Hagedorn C
        • et al.
        Emergency department use among children with tracheostomies: avoidable visits.
        J Pediatr Rehabil Med. 2015; 8: 105-111
        • Foster CC
        • Mangione-Smith R
        • Simon TD
        Caring for children with medical complexity: perspectives of primary care providers.
        J Pediatr. 2017; 182: 275-282.e4
        • Nicholas DB
        • Zwaigenbaum L
        • Muskat B
        • et al.
        Toward practice advancement in emergency care for children with Autism spectrum disorder.
        Pediatrics. 2016;
        • Committee on Pediatric Emergency Medicine, American Academy of Pediatrics
        Emergency preparedness for children with special health care needs.
        Pediatrics. 1999; 104: e53
        • Spahr CD
        • Flugstad NA
        • Brousseau DC
        The impact of a brief expectation survey on parental satisfaction in the pediatric emergency department.
        Acad Emerg Med. 2006;
        • Wissow LS
        • Kimel MBD
        Assessing provider-patient-parent communication in the pediatric emergency department.
        Ambul Pediatr. 2002;<0323:APPPCI>2.0.CO;2
        • Zoltowski KSW
        • Mistry RD
        • Brousseau DC
        • et al.
        What parents want: does provider knowledge of written parental expectations improve satisfaction in the emergency department?.
        Acad Pediatr. 2016;
        • Curran J
        • Cassidy C
        • Chiasson D
        • et al.
        Patient and caregiver expectations of emergency department care: a scoping literature review.
        Int Emerg Nurs. 2017;
        • Samuels-Kalow M
        • Peltz A
        • Rodean J
        • et al.
        Predicting low-resource-intensity emergency department visits in children.
        Acad Pediatr. 2018; 18: 297-304
        • Hudgins JD
        • Monuteaux MC
        • Bourgeois FT
        • et al.
        Complexity and severity of pediatric patients treated at United States emergency departments.
        J Pediatr. 2017; 186: 145-149
        • Neuman MI
        • Alpern ER
        • Hall M
        • et al.
        Characteristics of recurrent utilization in pediatric emergency departments.
        Pediatrics. 2014; 134: e1025-e1031
        • Morrison AK
        • Brousseau DC
        Seeking care for pediatric illness: health system perspective.
        Acad Pediatr. 2019;
        • Murtagh Kurowski E
        • Byczkowski T
        • Grupp-Phelan JM
        Comparison of emergency care delivered to children and young adults with complex chronic conditions between pediatric and general emergency departments.
        Acad Emerg Med. 2014; 21: 778-784