Dr. Ullrich's long-term career goals are to become a productive independent investigator in pediatric hematopoietic stem cell transplantation (HSCT) and palliative care investigating interventions aimed at ameliorating suffering in children with life-threatening illness. Her short-range goals are to garner experience in quantitative and qualitative research methods, with the ultimate aim of achieving scientific independence. Her most recent investigative efforts have been to understand the end-of-life experience of children who do not survive after hematopoietic stem cell transplantation, an area that had not previously been the focus of systematic inquiry. Because Dr. Ullrich's preliminary cross-sectional data suggest that suffering is substantial in children who undergo HSCT, especially at the end of life, she seeks to better understand symptom distress and health-related quality of life (HRQoL) in children throughout the transplant trajectory. She will 1) prospectively assess the natural history of symptoms, distress from symptoms and quality of life in children undergoing HSCT 2) to pilot an intervention that routinely feeds back quality of life and symptom data as a component of routine care, and 3) interview bereaved parents of children whose last therapy was HSCT, to explore in a detailed fashion the child's symptom experience at end of life. Such an approach will provide unique opportunities to understand the natural history of child symptoms and HRQoL throughout the transplant course, regardless of outcomes. Drs. Joanne Wolfe, Stephanie Lee and Susan Parsons will oversee her training and career development, which will also be supported by an Advisory Board. Dr. Ullrich's research and training will be based at Dana-Farber Cancer Institute and Children's Hospital Boston, which together offer a vast array of opportunities for intellectual exchange and scientific development. In addition to the proposed research project, her career development plan includes activities designed to further her intellectual, leadership and clinical and research skills through course work in qualitative and quantitative methods such as longitudinal analysis and advanced epidemiologic methods;seminars and conferences;related clinical activities;and selected committee work. The career development plan in its entirety will provide Dr. Ullrich with every opportunity to develop into a successful independent outcomes investigator. Based on the knowledge, skills and systematically collected data generated by the proposed research, she will be well-positioned to seek additional funding to support a multi-centered trial aiming to optimize comfort and quality of life in children who undergo HSCT.
Significant advances in hematopoietic stem cell transplantation (HSCT) have improved survival rates and extended the possibility of cure to growing numbers of children. HSCT remains a high risk endeavor, however, and optimization of symptom control and maximization of health-related quality of life (HRQoL) lag behind other medical and technical advances. Preliminary cross-sectional data suggest that suffering is substantial in these children, especially at the end of life. The purpose of the proposed research is to systematically evaluate symptom distress and HRQoL in children throughout the transplant trajectory, and to preliminarily evaluate an intervention aimed at easing child suffering. These studies will inform needed research and clinical efforts aimed at ameliorating suffering in children who undergo HSCT.
