1. Factors Associated with the Level of Support Requested for Children with Life-Limiting Conditions Gary D. Ceneviva MD, Nicole C. Hahnlen RN, Michele L. Shaffer PhD, Paul Felker MSW, Jennifer L. Ruth MD, Harry P. Bramley DO, Steven E. Lucking MD, Robert F. Tamburro MD Pennsylvania State University, Departments of Pediatrics and Public Health Sciences Penn State Hershey Children’s Hospital, Hershey, PA Introduction  Children with complex, life-limiting conditions are a highly diverse population with a variety of illness trajectories that are often characterized by prognostic uncertainty.  Families of these children frequently face many challenging decisions including the decision to limit resuscitation.  Understanding factors that influence the decision to limit resuscitation can be useful to clinicians providing care for these children. Objective The objective of this project is to assess factors that may be associated with a decision to limit or pursue resuscitation. Methods  Children with complex life-limiting conditions cared for by our palliative care service from January 2007 through June 2008 were identified from the program database. Results  Diagnosis to consult time ranged from less than a month to 19 years (median 14 months).  Table 1 denotes primary diagnoses.  Thirteen children (39%) had support limited.  Of variables assessed, only age (p=0.030) and time from diagnosis to consult (p=0.048) were associated with level of support (Table 2).  Support was more likely to be limited with younger age and shorter time between diagnosis and consult.  Although not statistically significant, 6/7 families (86%) who conveyed that spirituality was not important opted for full support compared to 13/24 (54%) families who revealed that spirituality was important. Conclusions These pilot data identify factors that may influence decisions regarding the level of support chosen for children with life-limiting conditions. Implications When performed at an earlier age and time of diagnosis, palliative care consults may assist families in complex decision-making. These data may be useful in designing larger scale, prospective studies that can be utilized by clinicians caring for these children. The Hummingbird Program at Penn State Hershey Children’s Hospital was established thanks to the generous gift of Ed and Jeanne Arnold Methods  A complex medical condition was defined as any serious illness or injury that is either life-limiting or life- threatening and requires specialty pediatric care and hospitalization in a tertiary care center.  Data abstracted at the time of initial consult included: demographics, diagnoses, spirituality, time from diagnosis until consult, and level of resuscitative support.  Resuscitative support status was dichotomized as either full or limited.  Limited support equaled a decision to not attempt resuscitation.  Logistic regression analysis was conducted to identify associations between support status and the above variables. Results  Thirty -three patients were identified; 23 males and 10 females.  Twenty-six children were Caucasian, five Hispanic and two Asian.  Ages ranged from newborn to 19 years (median 3 years). Abstract Introduction: Children with complex life-limiting conditions are characterized by prognostic uncertainty. Families of these children frequently face challenging decisions including the decision to limit resuscitation. Understanding factors that influence these decisions may be useful. Hypothesis: Identifiable factors may be associated with a decision to limit resuscitation in children with life- limiting conditions. Methods: Children cared for by our palliative care service from 01/07-06/08 were identified. Data abstracted from the initial consult included demographics, diagnoses, spirituality, time from diagnosis until consult, goals of care, and level of support. Support status was dichotomized as either full or limited. Limited support equaled a decision to not attempt resuscitation. Logistic regression was conducted to identify associations between support status and these variables. Results: 33 patients were identified; 23 males. 26 children were Caucasian, five Hispanic, and two Asian. Ages ranged from newborn to 19 years (median 3 years). Diagnosis to consult time ranged < 1 month to 19 years (median 14 months). Diagnostic categories included neuromuscular (n=14), genetic (n=6), cardiovascular (n=4), respiratory (n=3), malignancy (n=2), and others (n=4). 13 children (39%) had support limited. Of variables assessed, age (p=0.030) and time from diagnosis to consult (p=0.048) were associated with a difference in level of support chosen. Support was more likely to be limited with younger age and shorter time between diagnosis and consult. Conclusions: These pilot data identify factors that may influence decisions regarding the level of support chosen for children with life-limiting conditions. When performed at an earlier age and time of diagnosis, palliative care consults may assist families in complex decision-making. These data may be useful in designing larger scale, prospective studies that can be utilized by clinicians caring for these children. Table 1. Primary Diagnoses Neuromuscular (N = 15) Genetic (N = 6) Holoprosencephaly 1q21.1 deletion Grade IV IVH/ Hydrocephalus Trisomy 10p Traumatic brain injury Epidermolysis bullosa Lissencephaly Triploidy 69 XXXY Hypoxic ischemic encephalopathy Mucopolysaccharidosis type 3 Hydranencephaly Jacobsen / Paris-Trousseau Spinal muscular atrophy type 1 Hematologic / Immunologic (N = 2) Cerebral palsy Klippel-Trenaunay syndrome Near-drowning Wegener’s granulomatosis Meningitis Malignancy (N = 2) Respiratory (N = 3) ALL s/p HSCT ; chronic GVHD Cystic Fibrosis Metastatic osteosarcoma Pulmonary alveolar proteinosis Renal (N=1) Renal agenesis Cardiovascular (N = 4) Complex congenital cyanotic heart disease ID # 422 Table 2. Characteristics Full Support Limited Support p Value Gender NS Male 14 9 Female 6 4 Ethnicity NS Caucasian 17 9 Hispanic 2 3 Asian 1 1 Age 0.029 Time from diagnosis 0.048 to consult Spirituality NS Important 13 11 Not important 6 1