Pediatric Palliative Care Research

Pediatric Palliative Care Research | CPCE

Pediatric palliative, or advanced care, is focused on providing relief from pain, symptoms or stress related to a chronic and/or life-threatening illness. Over the past decade, pediatric palliative care has emerged as a new subspecialty, with palliative care programs being established at many children's hospitals.

Early work in this area developed a complex chronic conditions (CCC) classification system using International Classification of Diseases codes. The system has been adopted by the Children’s Hospital Association and by many investigators, and has brought the needs of this vulnerable population of patients into focus.

Additionally, “big data” studies of pediatric palliative care have been instrumental in building the argument for the need for pediatric palliative care services and in characterizing the nature of these needs.

Nonetheless, optimal care for children with life-limiting and terminal conditions continues to be hindered by an inadequate evidence-base regarding the effectiveness and safety of medications used to manage pain and symptoms.

Effectiveness and Safety of Hospital-Based Pediatric Palliative Care

Palliative Care Published Research

Effectiveness and Safety of Hospital-Based Pediatric Palliative Care

A dearth of information and evidence of effectiveness and safety hampers the development of pediatric palliative care both in terms of improving the quality of clinical practice and in terms of motivating the development of hospital-based programs and teams dedicated to assuring access for all pediatric patients potentially in need of palliative care to highest quality clinical services.

We are, therefore, studying the comparative effectiveness and safety of hospital-based pediatric palliative care using pharmacoepidemiology studies, qualitative studies, observational studies, and clinical trials. Palliative care-related pharmaceuticals (PCRPs) represent the broad category of diverse drugs that are used to treat patient symptoms and ameliorate any suffering. We specifically aim to:

  1. determine overall rates of use of PCRPs, and rates of possible drug-drug interactions, among hospitalized children with life-threatening complex chronic conditions
  2. analyze variation among hospitals in the usage of PCRPs in the treatment of these hospitalized children
  3. compare PCRP-treatment-associated outcomes and adverse events between matched sets of hospitalized children with life-threatening complex chronic conditions, measuring the differences in outcomes and adverse events among patients who did and who did not receive PCRPs in eight specific clinical scenarios.

What’s Next: The resulting findings and information will shape and motivate future quality of care metrics, clinical care guidelines, and the design and conduct of clinical palliative care trials.

Funding: Agency for Healthcare Research and Quality

Please contact Chris Feudtner, MD, PhD, MPH, Attending Physician and Director of Research, Pediatric Advanced Care Team, for more information about this line of research.

Pediatric Palliative Care Published Research

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

Feudtner C, Feinstein JA, Satchell M, Zhao H, Kang TI. Shifting place of death among children with complex chronic conditions in the United States, 1989-2003. JAMA. 2007;297(24):2725-32. 

Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127(6):1094-101.

Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, et al. Pediatric palliative care programs in children's hospitals: a cross-sectional national survey. Pediatrics. 2013;132(6):1063-70. 

Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980-1997. Pediatrics. 2000;106(1 Pt 2):205-9.

Feudtner C, Villareale NL, Morray B, Sharp V, Hays RM, et al. Technology-dependency among patients discharged from a children's hospital: a retrospective cohort study. BMC Pediatr, 2005. 9;5(1):8.

Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr. 2014;14:199. 

Berry JG, Hall M, Neff J, Goodman D, Cohen E, et al. Children with medical complexity and Medicaid: spending and cost savings. Health Aff (Millwood). 2014;33(12):2199-206.