title: Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study.
abstract: BACKGROUND
  Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning.
  
  
  METHODS
  Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility.
  
  
  RESULTS
  Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation.
  
  
  CONCLUSIONS
  Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.
authors.affiliation: Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, CA, USA.|Department of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA.
authors.forename: D B
authors.initials: DB
authors.lastname: Liberman
authors.affiliation: Department of Biomedical Engineering, Yale University, New Haven, CT, USA.
authors.forename: E
authors.initials: E
authors.lastname: Song
authors.affiliation: Department of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA.|Division of Anesthesiology and Critical Care Medicine, Children's Hospital Los Angeles, Los Angeles, CA, USA.
authors.forename: L M
authors.initials: LM
authors.lastname: Radbill
authors.affiliation: Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, CA, USA.
authors.forename: P K
authors.initials: PK
authors.lastname: Pham
authors.affiliation: Division of Critical Care and Program in Palliative Care, Ann and Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: S F
authors.initials: SF
authors.lastname: Derrington
mesh_terms: D000328:Adult; D002648:Child; D002662:Child Health Services / Q000458:organization & administration; D002908:Chronic Disease / Q000523:psychology / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D010348:Patient Care Team; D000070659:Patient Comfort / Q000458:organization & administration*; D010865:Pilot Projects; D011320:Primary Health Care / Q000458:organization & administration*; D011788:Quality of Life; D013727:Terminal Care / Q000458:organization & administration*
keywords: advanced care planning; decision-making; end of life; palliative care; special-needs children