Within the broader field of health services research in oncology, Dr. Wolfe's original work focused on assessing the patterns of care, determinants and outcomes of the care of children with advanced cancer using survey methodology. She first became interested in investigation the quality of care for children with advanced care during her fellowship training when she embarked on a research project to identify the needs of children with cancer who have life-limiting illness and how to better support their families. This project led to two high profile research publications in the New England Journal of Medicine (342:326-333, 2000) and the Journal of the American Medical Association (284: 2469-2475, 2000).
Dr. Wolfe is currently heading a research program evaluating interventions aimed at improving quality of life for children with advanced cancer. The PediQUEST Study is a multicentered randomized controlled trial (RCT) aimed at assessing the effect of a novel intervention in children with advanced cancer. Specifically, the study is assessing whether increasing physician and family awareness about the child’s experience effects parent-physician communication and child suffering. This is assessed by means of routinely measuring and reporting symptom and quality-of-life data using an innovative data collection strategy: a hand-held computer devise, the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST). PediQUEST readily administers a user-appropriate survey instrument and has the ability to generate an instant report summarizing how the patient feels. All study participants complete PediQUEST at the clinic, hospital or over the phone at most once a week. Parents are asked to complete a survey about their views about their child’s illness 4 times during the 9-month follow-up period. Physicians are also asked about their perspectives on the child’s illness. Upon enrollment, subjects are randomized to the intervention or control arms of the study. The intervention consists of giving feedback reports generated by PediQUEST to the family and physician. Furthermore, primary oncologists, nurses, and psychosocial clinicians, along with the Pediatric Advanced Care Team (PACT) and the Pain Treatment Service receive emails alerting them to uncontrolled symptoms. The control arms completes the same instruments but feedback is not generated.
This project represents one of the first efforts to assess the feasibility of conducting a randomized controlled supportive care trial in children with advanced cancer. We anticipate that results from this project will lead to important understanding of how to successfully plan an RTC in this patient population. We will also preliminarily evaluate the impact of an innovative approach to improving quality of life and comfort in children with advanced cancer through PediQUEST provider and parent feedback.