Chris Feudtner's research is devoted to advancing the wellbeing of children, adolescents, and young adults with complex chronic conditions and serious, often rare, illnesses, and to promote the wellbeing of their families. Our research strives to improve our understanding of these conditions, the impact that they have on the lives of these individuals and their families and how to improve clinical care and health policy to improve patient and family outcomes. His research efforts include large scale epidemiologic and health services research studies in the arenas of pediatric palliative care and medication exposure, as well as intimate interview studies of parental stress and parental decision-making of parents of children with serious illness. In addition, Chris conducts research and produces academic work in the field of medical ethics. Each of these areas is described more in depth below:
Chris has championed the conduct of prospective cohort studies of parental decision-making in pediatric palliative care, employing a mixed methods approach. These studies have substantially advanced the understanding of the "real time" psychology of how parents conceive of the decisions they are being asked to make, and the influence (and complexity) of emotions and a sense of duty to be a "good parent" on these decisions.
Chris has conducted or collaborated on most of the "big data" studies of pediatric palliative care. This work has been instrumental in building the argument for the need for pediatric palliative care services, and characterizing the nature of these needs.
Chris began his pediatric research career by conceptualizing "complex chronic conditions" as a means to "see the forest for the trees" amidst all the rare diseases in pediatrics, and operationalized this concept using ICD codes. This work has substantially influenced the study of children with serious illness, with the CCC system used by the Children’s Hospital Association and by numerous investigators. This work has brought the needs of this vulnerable population of patients with medical complexity more clearly into focus.
Chris has uncovered evidence of parental strain and distress through his clinical work in pediatric palliative care and in the care of children with complex chronic conditions, as well as in the data gathered regarding how parents are feeling as they care for their children and try to make the best medical decisions on their child’s behalf. The studies conducted in this area have demonstrated several key findings:
Because of the importance of medications to children with complex chronic conditions, including the clear benefits as well as the potential harms that they pose, Chris began to investigate the use of medications in the pediatric population broadly, with a particular focus on children with serious illness and the use of what can be called palliative care relevant medications, as well as potential drug-drug interactions. The Feudtner lab has conducted the largest studies in this area to date, providing generalizable population-level estimates.
Chris has conducted research and scholarship regarding various medical ethics topics, including work that brought to light the ethical dilemmas that medical students confront, the importance of a complete model of "hope" to understand an ethically appropriate way for clinicians to interact with patients’ and parents’ hopes, the ethically important characteristics of comparative effectiveness research, and the influences on decision making by physicians and other clinicians regarding the care of children with serious illness.