Self-Management of Cancer-Related Fatigue by Adolescents: Pilot Study of an Evidence Based Educational Resource.
Final Report Summary: This study played a significant role in integrating nursing research into the research activities of the Division of Hematology/Oncology at SCH. It enhanced visibility of the value of nursing research in the care of patients and families by highlighting the nursing research focus on the patient/family experience of symptoms such as cancer-related fatigue that have a notable impact on quality of life during treatment.This study also laid a foundation for successful recruitment, retention, and data collection in future studies by cultivating CRA interest in working on nursing research, and specifically symptom research, with this population as well as developing CRA skill in approaching/assenting/consenting this population (and parents, where applicable) for nursing research as well as in talking with adolescents with cancer about their symptom experience.
Additionally, this study played a notable role in career development for the PI. It was her first funded research as a doctorally prepared pediatric oncology nurse researcher. It proved to be an invaluable learning experience in the practical considerations of conducting nursing research at SCH that will significantly inform the conduct of her future studies. As external funding, it secured her invitation to full membership in the Seattle Children’s Research Institute’s Center for Clinical and Translational Research (CCTR) and through CCTR membership, invitation to membership in the Institute of Translational Health Sciences (ITHS), a consortium consisting of Seattle Children’s, the University of Washington, and the Fred Hutchinson Cancer Research Center founded in 2007 and funded through the NIH's Clinical and Translational Science Award (CTSA) program. The CCTR provides infrastructure, technical and methodological support, education, and collaborative assistance to investigators in the design, conduct, and analysis of clinical research. CCTR programs provide seed funding and mentoring designed to support development of clinical and translational research projects and nurture the careers of pediatric clinical researchers at all levels. The ITHS supports translational research by providing pilot funding, mentoring, academic programs, tuition support, short courses, seminars, and acting as a clearinghouse of educational opportunities in the greater research community. This study was the first in the PIs effort to build a program of research at SCH on symptom management in adolescents with cancer. Subsequently, the PI has: a) been awarded a Children’s Oncology Group Nursing Research Traineeship for secondary data analysis of Fatigue and Physical Activity Reported by Adolescents and Young Adults Treated for Hodgkin Disease on AHOD0031; b) been awarded a Supportive Care Research Grant by St Baldrick’s Foundation for development of A Computer-Based Tool to Evaluate Symptom Clusters in Adolescents with Cancer; c) continued to collaborate with her mentor for the ALSF grant, Dr. P.S. Hinds, by serving as SCH site PI for Dr. Hinds R21(National Institute of Nursing Research) Voices of Children and Adolescents with Incurable Cancer on Phase I or Phase II Trials; and d) submitted a multisite R01 (National Institute of Nursing Research) for Exploration of Symptom Clusters in Adolescents with Cancer Receiving Myelosuppressive Chemotherapy.
Thank you for the honor of being chosen to receive an ALSF nursing grant and for your support throughout the conduct of the study. It has been a wonderful experience and I shall definitely encourage colleagues to apply for ALSF grants in future.