Summaries of Independent Scientist (K) Awards

Feudtner, John

Institution: The University of Washington (2000-2002) and the Children's Hospital of Philadelphia (2002-2006)
Grant Title: Profiling the Needs of Dying Children
Grant Number:  K08 HS00002
Duration: 5 years (2000-2005)
Total Award: $625,300

Project Description: This research focused on improving the care and health policy for dying children, and  profiling the needs of dying children.  There were five goals:

1. Determine whether the prevalence of terminal congenital complex chronic conditions (CCC) is rising in the national population.
2. Measure the change in prevalence of children with terminal CCCs in tertiary children's hospitals, thereby assessing the magnitude of need for hospital-based pediatric palliative care services.
3. Test whether the intensity of medical care increases in the 30-day interval prior to the day on which death, compared to the preceding 23 month interval, so as to improve clinicians' prognostic inferences regarding likelihood of death Examine two markers of quality of care for children with CCs by testing whether the continuity of care deteriorates in the last two years of life for children with CCS.
4. Examine the timing and referral to hospice.

Career Goals: Dr. Feudtner is an attending physician and Director of Research, Pediatric Advanced Care Team at the Children's Hospital of Philadelphia. He received both his MD and PhD from the University of Pennsylvania in Philadelphia and served his residency in Pediatrics at the University of Washington, Seattle where he later received his MPH. Dr. Feudtner has devoted his career to improving the quality of life for children with complex chronic conditions, and their families, throughout their life span.

Progress to Date: This grant has been completed.  The research produced from this K08 Grant can guide the planning of pediatric palliative care services both at the national level and at the level of individual children's hospitals.  Three findings in particular are noteworthy: 

1. From a population-based perspective, the needs of dying infants are significant and constitute the majority of cases.
2. There is an large need among patients dying from diseases other than cancer as they represent the majority of cases.
3. The hospital-based palliative care services for children dying beyond infancy is important but limited given the limited exposure these patients have to hospitals.

Highlights and Specific Accomplishments:

• External reviewer of the Institute of Medicine's report When Children Die.
• Co-founder, attending physician, and Director of Research for the Pediatric Advanced Care Team at The Children's Hospital of Philadelphia.
• Ambulatory Pediatric Association Special Projects Award.
• Robert Wood Johnson Clinical Scholars Program.
• Stanley Stamm Role Model in Medicine Award, Residents in the Pediatric Training Program, University of Washington, 2002.

K-Generated Publications:

Feudtner C, Christakis DA, Connell FA. Pediatric deaths due to complex chronic conditions: A population-based study of Washington State, 1980 to 1997. Pediatrics 2000. 106:205-09.

Silveira MJ, DiPiero A, Gerrity M, Feudtner C. Patients' knowledge of options at the end of life: Ignorance in the face of death. JAMA 2000. 284:2483-88.

Christakis DA, Feudtner C, Pihoker C, Connell FA. Continuity and quality of care for children with diabetes who are covered by Medicaid. Ambulatory Pediatrics 2001. 1:99-103.

Feudtner C, Marcuse EK. Ethics and immunization policy: Promoting dialogue to sustain consensus. Pediatrics 2001. 107:1158-64.

Feudtner C, Hays RM, Haynes G, et al. Deaths attributed to pediatric complex chronic conditions:  National trends and implications for supportive care services. Pediatrics 2001. 107(6):E99.

Clever AL, Edwards KA, Feudtner C, Braddock CH.  Ethics and communication: Why do medical students not speak out about their ethical concerns? Journal of General Internal Medicine 2001. 16:560-66.

Chen FM, Feudtner C, Rhodes LA, Green LA.  Role conflicts of physicians and their family members:  Rules but no rulebook. Western Journal of Medicine 2001. 175:236-39.

Feudtner C, Silveira MJ, Christakis, DA.  Where do children with complex chronic conditions die? Patterns in Washington State, 1980-1998. Pediatrics 2002. 109(4):656-60.

Van Niel CW, Feudtner C, Garrison MM, Christakis DA.  Lactobacillus therapy for infectious diarrhea in children: A meta-analysis. Pediatrics 2002. 109(4):678-84.

Feudtner C, Christakis DA, Zimmerman FJ, et al. Characteristics of deaths occurring in children's hospitals: Implications for supportive care services. Pediatrics 2002. 109(5):887-893.

Feudtner C, Haney J, Dimmers MA. The spiritual care needs of hospitalized children and their families: A national survey of pastoral care providers' perceptions. Pediatrics 2003. 111(1):e67-72.

Lewis CW, Carron JD, Perkins JA, Sie KC, Feudtner C. Tracheotomy in pediatric patients: A national study of rates and outcomes. Archives of Otolaryngology - Head and Neck Surgery 2003. 129(5):523-29.

Feudtner C, DiGuisseppe DL, Neff JM.  Hospital care for children in the last year of life: A population-based study of Washington State, 1990-1996. BMC Medicine 2003. 1(1):3.

Sices L, Feudtner C, McLaughlin J, Drotar D, Williams M.  How do primary care physicians manage children with possible developmental delays? A national survey with an experimental design. Pediatrics 2004. 113(2):274-82.

Keren R, Pati S, Feudtner C.  Generation gap: Difference between children and adults pertinent to the economic of health interventions. Pharmoeconomics 2004. 22(2):71-81.

Bundy DG, Feudtner C.  Preparticipation physical evaluations for high school athletes: Critique of a screening program. Ambulatory Pediatrics 2004. 4(3):260-63.

Rubin DM, Alessandrini EA, Feudtner C, et al. Placement stability and mental health costs for children in foster care. Pediatrics 2004. 113(5):1336-41.

Hirshman KB, Xie SX, Feudtner C, Karlawish JHT.  How does the role in medical decision-making change over time for patients with alzheimer's disease? Journal of Geriatric Psychiatry and Neurology 2004. 17(2):55-60.

Forte AL, Hill M, Pazder R, Feudtner C.  Bereavement care interventions: A systematic review. BMC Palliative Medicine 2004 3(1):3.

Rubin DM, Alessandrini EA, Feudtner C,  et al. Placement changes and emergency department visits in the first year of foster care. Pediatrics 2004. 114(3):e354-60.

Silveria MJ, Rhodes L, Feudtner C.  Deciding how to decide: What processes do patients use when making medical decisions? Journal of Clinical Ethics 2004. 15(3):269-81.

Kimberly MB, Forte AL, Carroll JM, Feudtner C.  Pediatric do-not-attempt-resuscitation orders and public schools: A national assessment of policies and laws. American Journal of Bioethics 2005. 5(1):59-65.

Hoehn KS, Wernovsky G, Rychik J, Gaynor JW, Spray TL, Feudtner C, Nelson RM. What factors are important to parents making decisions about neonatal research? Archives of Disease in Childhood, Fetal and Neonatal Edition 2005. 90(3):F267-69.

Bair-Merritt MH, Shah SS, Zaoutis TE, Bell LM, Feudtner C.  Suppurative intracranial complications of sinusitis in previously healthy children. Pediatric Infectious Disease Journal 2005. 24(4):384-86.

Feudtner C, Villareale NL, Morray B, et al. Technology-dependency among patients discharged from a children's hospital: A retrospective cohort study. BMC Pediatrics 2005. 5(1):8.

Feudtner C. Piece of my mind:  Dare we go Gently? JAMA 2000. 284(13):1621-22.

Feudtner C. What are the goals of patient education? Western Journal of Medicine 2001. 174(3):173-4.

Feudtner C.  Child advocacy and robust community-centered research. Archives of Pediatrics and Adolescent Medicine 2001. 155(4):438-39.

Feudtner C.  The head, the heart, and neonatology. Health Affairs 2001. 20(6):312-13.

Feudtner C.  Policies, procedures, and the irony of protections. Western Journal of Medicine 2002. 176(1):22.

Feudtner C. On my mind:  Grief-love: Contradictions in the lives of fathers of children with disabilities. Archives of Pediatrics and Adolescent Medicine 2002. 156(7):643.

Feudtner C. Pathway to health: Juvenile diabetes mellitus and the origins of managerial medicine. The formative years:  Childhood health and health care 1880-2000. Alexandra Stern and Howard Markel (eds.). University of Michigan Press, 2002.

Feudtner C.  Review of William I. Cohen and others, Down syndrome: Visions for the 21st century. Archives of Pediatrics and Adolescent Medicine 2003. 157:494.

Feudtner C.  Perspectives on quality at the end of life. Archives of Pediatrics and Adolescent Medicine 2004. 158(5):415-8.

Strong C, Feudtner C, Carter BS, Rushton RH.  Goals, values, and conflict resolution. Palliative care for infants, children, and adolescents: A practical handbook. Brian S. Carter, Maria Levetown (eds.). Johns Hopkins University Press, 2004. p. 23-43.

Feudtner C, Connor SR.  Epidemiology and health services research. Palliative care for infants, children, and adolescents: A practical handbook. Brian S. Carter, Marsha Levetown (eds.). Johns Hopkins University Press, 2004. p.3-22.

Hays RM, Haynes G, Geyer JR, Feudtner C. Communication at the end of life. Palliative care for infants, children, and adolescents: A practical handbook. Brian S. Carter, Marcia Levetown (eds.). Johns Hopkins University Press, 2004. p. 112-140.

Feudtner C.  Review of Sheldon Krimsky. Science in the private interest: Has the lure of profit corrupted the virtue of biomedical research? Ambulatory Pediatrics 2004. 4(6):518.

Feudtner C. Tolerance and integrity. Archives of Pediatrics and Adolescent Medicine 2005. 159(1):8-9.

Silveira MJ, Feudtner C.  Shared medical decision making. JAMA 2005. 293(9):1058-59.

Feudtner C.  Control of suffering on the slippery slope of care. Lancet 2005. 365(9467):1284-86.

Feudtner C. The predicaments of "dangerous safety": Living with juvenile diabetes in 20^th century America. Western Journal of Medicine 2000. 172(1):64-7.

Feudtner C, Gabbe SG. Diabetes and pregnancy: Four motifs of modern medical history. Clinical Obstetrics and Gynecology 2000. 43(1):4-16.

Glew G, Rivara F, Feudtner C. Bullying: Children hurting children. Pediatrics Review 2000. 21(6):183-9.

Larson EB, Newcomer LN, Brennan TA, Jencks S, Christakis DA, Feudtner C. First do no harm—To err is human. Effective Clinical Practice 2000. 3(6):294-96.

Clever SL, Edwards KA, Feudtner c, Braddock CH. Ethics and communication: Does students' comfort addressing: Ethical issues vary by specialty team? Journal of General Internal Medicine 2001. 16(8):559-63.

Sices L, Feudtner C, McLaughlin J, Drotar D, Williams M. How do primary care physicians identify young children with developmental delays? A national survey. Journal of Developmental Behavior in Pediatrics 2003. 24(6):409-17.

Feudtner C. Bittersweet: Diabetes, insulin, and the transformation of illness. Chapel Hill: University of North Carolina Press. 2003.

Feudtner C. Assuming trust in insurance. American Journal of Bioethics 2004. 4(4):64-6.

Feudtner C. Hope and the prospects of healing at the end of life. Journal of Alternative and Complementary Medicine 2005. 11(Suppl 1):S23-30.

Guevara JP, Feudtner C, Romer D, et al. Fragmented care for  inner-city minority children with attention-deficit/hyperactivity Disorder. Pediatrics 2005. 116(4):e512-17.

Levine LJ, Schwarz DF, Argon J, Mandell DS, Feudtner C. Discharge disposition of adolescents admitted to medical hospitals after attempting suicide. Archives of Pediatrics and Adolescent Medicine 2005. 159(9):860-66.

Zaoutis TE, Argon J, Chu J, Berlin JA, Walsh TJ, Feudtner C. The epidemiology and attributable outcomes of candidemia in adults and children hospitalized in the United States: A propensity analysis. Clinical Infectious Diseases 2005. 41(9):1232-39.

Bair-Merritt MH, Blackstone M, Feudtner C. Physical health outcomes of childhood exposure to intimate partner violence: A systematic review. Pediatrics 2006. 117(2):e278-90.

Bair-Merritt MH, Feudtner C, Mollen CJ, et al. Screening for intimate partner violence using an audiotape questionnaire: A randomized clinical trial in a pediatric emergency department.  Archives of Pediatric and Adolescent Medicine 2006. 160(3):311-16.

Brosco JP, Feudtner C. Growth attenuation: A diminutive solution to a daunting problem. Archives of Pediatric and Adolescent Medicine 2006. 160(1):1077-78.

Chu JH, Feudtner C, Hyedon K, et al. Hospitalizations for endemic mycoses: A Population-based national study. Clinical Infectious Diseases 2006. 42(6):822-25.

Feudtner C, Silveira MJ, Shabbout M, Hosking RE. Distance from home when death occurs: A population-based study of Washington State, 1989-2992. Pediatrics 2006. 117(5):e-932-39.

Kimberly BM, Hoehn KS, Feudtner V, et al. Variation in standards of research compensation and child assent practices: A comparison of 69 institutional review board-approved informed permission and assent forms for 3 multicenter pediatric clinical trials. Pediatrics 2006. 117(5):1706-11.

Silveira MJ, Copeland LA, Feudtner C. Likelihood of home death associated with local rates of home birth: Influence of local area healthcare preferences on site of death. American Journal of Public Health 2006. 96(7):1243-48.

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