title: Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN).
abstract: OBJECTIVE
  Identify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN).
  
  
  METHODS
  We conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes.
  
  
  RESULTS
  The Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes.
  
  
  CONCLUSIONS
  Caring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions.
authors.affiliation: Intermountain Healthcare, Murray, UT, USA.|Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.
authors.forename: Pallavi
authors.initials: P
authors.lastname: Ranade-Kharkar
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.|VA Medical Center, Salt Lake City, UT, USA.
authors.forename: Charlene
authors.initials: C
authors.lastname: Weir
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.|Department of Pediatrics, University of Utah Health Sciences Center, Salt Lake City, UT, USA.
authors.forename: Chuck
authors.initials: C
authors.lastname: Norlin
authors.affiliation: Partners HealthCare, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
authors.forename: Sarah A
authors.initials: SA
authors.lastname: Collins
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.
authors.forename: Lou Ann
authors.initials: LA
authors.lastname: Scarton
authors.affiliation: Intermountain Healthcare, Murray, UT, USA.
authors.forename: Gina B
authors.initials: GB
authors.lastname: Baker
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.
authors.forename: Damian
authors.initials: D
authors.lastname: Borbolla
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.
authors.forename: Vanina
authors.initials: V
authors.lastname: Taliercio
authors.affiliation: Department of Biomedical Informatics, University of Utah, Salt Lake City, UT, USA.
authors.forename: Guilherme
authors.initials: G
authors.lastname: Del Fiol
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D002908:Chronic Disease; D019988:Children with Disabilities; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D020380:Needs Assessment; D010290:Parents; D010347:Patient Care Planning / Q000458:organization & administration*; D010348:Patient Care Team; D062526:Patient Navigation; D010820:Physicians
keywords: CYSHCN; Children and youth with special health care needs; Critical Decision Method; care coordination; information needs