title: Patterns of End-of-Life Care in Children With Advanced Solid Tumor Malignancies Enrolled on a Palliative Care Service.
abstract: BACKGROUND
  Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs.
  
  
  OBJECTIVE
  We evaluated outcomes and symptoms in children with solid tumors and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care (PC) service.
  
  
  METHODS
  We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children's Research Hospital, before and after implementation of the institutional QoL/PC service in January 2007. Patients who died between July 2001 and February 2005 (historical cohort; n = 134) were compared with those who died between January 2007 and January 2012 (QoL/PC cohort; n = 57).
  
  
  RESULTS
  Median time to first QoL/PC consultation was 17.2 months (range 9-33). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms, 94% required intervention for ≥3 symptoms, and 76% received intervention for ≥5 symptoms. Eighty-three percent achieved their preferred place of death. Compared with the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median 12 vs. 3; P < 0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median 195 vs. 2 days; P < 0.001), and greater hospice enrollment (71% vs. 46%, P = 0.002).
  
  
  CONCLUSIONS
  Although children with solid tumor malignancies may have significant symptom burden toward the end of life, positive changes were documented in communication and in places of care and death after implementation of a pediatric PC service.
authors.affiliation: Department of Radiation Oncology, University of Florida Proton Therapy Institute, Jacksonville, Florida, USA.
authors.forename: Tamara Z
authors.initials: TZ
authors.lastname: Vern-Gross
authors.affiliation: Division of Solid Tumors, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Catherine G
authors.initials: CG
authors.lastname: Lam
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Zachary
authors.initials: Z
authors.lastname: Graff
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Sara
authors.initials: S
authors.lastname: Singhal
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Deena R
authors.initials: DR
authors.lastname: Levine
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Deborah
authors.initials: D
authors.lastname: Gibson
authors.affiliation: Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: April
authors.initials: A
authors.lastname: Sykes
authors.affiliation: Division of Anesthesiology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Doralina L
authors.initials: DL
authors.lastname: Anghelescu
authors.affiliation: Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
authors.forename: Ying
authors.initials: Y
authors.lastname: Yuan
authors.affiliation: Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA. Electronic address: justin.baker@stjude.org.
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
mesh_terms: D000293:Adolescent; D002648:Child; D003142:Communication; D003643:Death; D005260:Female; D006738:Hospices / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000453:epidemiology* / Q000628:therapy*; D010166:Palliative Care / Q000379:methods* / Q000706:statistics & numerical data*; D010372:Pediatrics / Q000379:methods / Q000706:statistics & numerical data; D011788:Quality of Life; D016414:Resuscitation Orders; D012189:Retrospective Studies; D013727:Terminal Care / Q000379:methods* / Q000706:statistics & numerical data*; D013997:Time Factors
keywords: Palliative care; end of life; pediatric; pediatric oncology