1 40 1 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2017 List Notes 1873-6513 Marcus, Katherine L Balkin, Emily M Al-Sayegh, Hasan Guslits, Elyssa Blume, Elizabeth D Ma, Clement Wolfe, Joanne Journal Article United States J Pain Symptom Manage. 2017 Sep 5. pii: S0885-3924(17)30463-3. doi: 10.1016/j.jpainsymman.2017.08.033. Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Patterns and Outcomes of Care in Children with Advanced Heart Disease Receiving Palliative Care Consultation Publisher An entity responsible for making the resource available Journal Of Pain And Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Advanced Heart Disease; Goals Of Care; Pediatric End-of-life Care; Pediatric Palliative Care Creator An entity primarily responsible for making the resource Marcus KL; Balkin E M; Al-Sayegh H; Guslits E; Blume E D; Ma C; Wolfe J Description An account of the resource CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children with AHD. METHODS: Retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016. RESULTS: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/non-structural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year prior. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n=109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (p=0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (p=0.008). CONCLUSION: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes. Identifier An unambiguous reference to the resource within a given context 10.1016/j.jpainsymman.2017.08.033 Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2017 Advanced Heart Disease Al-Sayegh H Balkin E M Blume E D Goals Of Care Guslits E Journal of Pain and Symptom Management Ma C Marcus KL November 2017 List Pediatric End-of-life Care Pediatric Palliative Care Wolfe J