Summaries of Independent Scientist (K) Awards

Feudtner, John

Institution: Children's Hospital of Philadelphia
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 seeks to improve the care and health policy for dying children, and will profile the needs of dying children, with the following five goals:

1. To determine whether the prevalence of terminal congenital complex chronic conditions (CCC) is rising in the national population.
2. To 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. To 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.
4. To examine two markers of quality of care for children with chronic conditions (CCs) by testing whether the continuity of care deteriorates in the last two years of life for children with CCS.
5. To examine the timing and referral to hospice.

Career Goals: Dr. Feudtner aims to improve the quality of life for children with complex chronic conditions, and their families, throughout their life span. He is particularly focused on enhancing palliative, end-of-life, and bereavement services across the range of locations where these children reside, from home to hospital intensive care units. His research strives to provide key decisionmakers—patients, parents, providers, policymakers—with information and decisionmaking supports that will facilitate making better decisions.

Progress to Date: Dr. Feudtner and collaborators have completed over a dozen studies that address the specific aims as well as the broader research agenda of profiling the needs of dying children and children with complex chronic conditions. He continues to work to improve his content knowledge and methodological analytic skills, including the development of novel methods of data analysis.  Increasingly, he is providing mentorship and leadership to other investigators in the realm of pediatric palliative, end-of-life, and bereavement care.

Future Plans: Dr. Feudtner will continue to perform population-level analyses of pediatric palliative, end-of-life, and bereavement care, addressing both hospital and hospice care. His major research initiative currently is to develop decision support procedures that specifically aim to address affective aspects of palliative care decisionmaking.  He also is working to develop an instrument to measure parental burden of care. Complementing these activities, he is actively engaged in examining the ethical difficulties and dilemmas that arise in the care of fragile or dying children.

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.

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;106:205-9.
• 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;284:2483-8.
• Christakis DA, Feudtner C, Pihoker C, Connell FA. Continuity and Quality of Care for Children with Diabetes who are Covered by Medicaid. Ambulatory Pediatrics 2000;1:99-103.
• Feudtner C, Marcuse EK. Ethics and Immunization Policy: Promoting Dialogue to Sustain Consensus. Pediatrics 2000;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 2000;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;16:560-6.
• Chen FM, Feudtner C, Rhodes LA, Green LA. Rules But No Rulebook: Role Conflicts Confronted by Physician-Family Members. Western Journal of Medicine 2001;175:236-9.
• Feudtner C, Silveira MJ, Christakis, DA. Where Do Children with Complex Chronic Conditions Die? Patterns in Washington State, 1980-1998. Pediatrics 2002;109:656-60.
• Van Niel CW, Feudtner C, Garrison MM, Christakis DA. Lactobacillus Therapy for Infectious Diarrhea in Children: A Meta-Analysis. Pediatrics 2002;109:678-84.
• Feudtner C, Christakis DA, Zimmerman FJ, et al. Characteristics of Deaths Occurring in Children's Hospitals: Implications for Supportive Care Services. Pediatrics 2002;109:887-93.
• 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:e67-e72.
• 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;129:523-9.
• 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(3).
• Sices L, Feudtner C, McLaughlin J, et al. How Do Primary Care Physicians Manage Children with Possible Developmental Delays?: A National Survey with an Experimental Design. Pediatrics 2004;113:274-82.
• Keren R, Pati S, Feudtner C. Generation Gap: Difference Between Children and Adults Pertinent to the Economic of Health Interventions. Pharmoeconomics 2004;22:71-81.
• Bundy DG, Feudtner C. Preparticipation Physical Evaluations for High School Athletes: Critique of a Screening Program. Ambulatory Pediatrics 2004;4:260-3.
• Rubin DM, Alessandrini EA, Feudtner C, et al. Placement Stability and Mental Health Costs for Children in Foster Care. Pediatrics 2004;113:1336-41.
• Hirshman KB, Xie SX, Feudtner C, Karlawish JHT. How Does the Role in Medical decisionmaking Change Over Time for Patients with Alzheimer's Disease? Journal of Geriatric Psychiatry and Neurology 2004;17:55-60.
• 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:e354-e360.
• 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, Feudtner C, et al. What Factors Are Important To Parents Making Decisions About Neonatal Research? Archives of Disease in Childhood, Fetal and Neonatal Edition 2005;90:267-9.
• Bair-Merritt MH, Shah SS, Feudtner C, et al. Suppurative Intracranial Complications of Sinusitis in Previously Healthy Children. Pediatric Infectious Disease Journal 2005;24(4):384-6.
• 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 Oct 4;284(13):1621-2.
• Feudtner C. What is the Value of Patient Education? Western Journal of Medicine 2001;174:173-4.
• Feudtner C. Child Advocacy and Robust Community-Centered Research. Archives of Pediatrics and Adolescent Medicine 2001;155:438-9.
• Feudtner C. The Head, The Heart, and Neonatology. Health Affairs 2001;20:312-3.
• Feudtner C. Policies, Procedures, and the Irony of Protections. Western Journal of Medicine 2002;176:22.
• Feudtner C. On My Mind: Grief-Love: Contradictions in the Lives of Fathers of Children with Disabilities. Archives of Pediatrics and Adolescent Medicine 2002;156:643.
• 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;158:415-8.
• 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, pp. 23-43, June 2004.
• 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, pp. 3-22, June 2004.
• 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, pp. 112-40, June 2004.
• 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):1058-9.
• Feudtner C. Control of Suffering on the Slippery Slope of Care. Lancet 2005;365(9467):1284-16.

AHRQ Research Portfolios: Care Management; Safety and Quality; Training.
AHRQ Goals: Quality and Patient Safety

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