One quarter of children with cancer do not survive and they experience substantial suffering in the last month of life. For example, over fifty percent of children suffer from pain and dyspnea, symptoms known to be amenable to effective palliation. Retrospective studies have suggested that parent and physician communication during this period is poor, with parents lagging behind physicians by over three months in their understanding that the child has no realistic chance of being cured. Yet, earlier recognition of a child's terminal prognosis by both the physician and parents is associated with better integration of palliative care. Using a prospective cohort design we will perform a pilot project in 117 children with advanced cancer to ascertain parent and physician perceptions about the child's prognosis and treatment goals over time (using a paper and pencil survey instrument). In addition, we will use Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST), a hand-held, computer-based system to routinely evaluate quality of life and symptoms experienced by children with advanced cancer. In the intervention phase of this project we will introduce immediate feedback of PediQUEST results to providers. In addition, electronic mail messages will be automatically generated if a patient's symptoms surpass a predetermined threshold. We will preliminarily assess the impact of this system on the natural history of symptoms and suffering, satisfaction, and the timing and quality of end-of-life discussions in order to generate data for sample size calculations for a future randomized controlled clinical trial. ? ? Mentored research activities during the award period will be complimented by a career development plan including coursework, seminars, teaching, committee work and clinical responsibilities which will ensure that the candidate makes a successful transition into an independent investigator and becomes a leader in pediatric oncology and palliative care.

Agency
National Institute of Health (NIH)
Institute
National Cancer Institute (NCI)
Type
Academic/Teacher Award (ATA) (K07)
Project #
5K07CA096746-05
Application #
7075403
Study Section
Subcommittee G - Education (NCI)
Program Officer
Silkensen, Shannon M
Project Start
2002-08-01
Project End
2008-06-30
Budget Start
2006-07-01
Budget End
2008-06-30
Support Year
5
Fiscal Year
2006
Total Cost
$135,837
Indirect Cost
Name
Dana-Farber Cancer Institute
Department
Type
DUNS #
076580745
City
Boston
State
MA
Country
United States
Zip Code
02215
Ullrich, Christina K; Dussel, Veronica; Orellana, Liliana et al. (2018) Self-reported fatigue in children with advanced cancer: Results of the PediQUEST study. Cancer 124:3776-3783
Feraco, Angela M; Dussel, Veronica; Orellana, Liliana et al. (2017) Tumor Talk and Child Well-Being: Perceptions of ""Good"" and ""Bad"" News Among Parents of Children With Advanced Cancer. J Pain Symptom Manage 53:833-841
Rosenberg, Abby R; Orellana, Liliana; Ullrich, Christina et al. (2016) Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study. J Pain Symptom Manage 52:243-53
Dussel, Veronica; Orellana, Liliana; Soto, Natalie et al. (2015) Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study. J Pain Symptom Manage 49:1059-69
Wolfe, Joanne; Orellana, Liliana; Ullrich, Christina et al. (2015) Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study. J Clin Oncol 33:1928-35
Rosenberg, Abby R; Orellana, Liliana; Kang, Tammy I et al. (2014) Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. J Clin Oncol 32:3005-11
Rosenberg, Abby R; Dussel, Veronica; Orellana, Liliana et al. (2014) What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer. J Palliat Med 17:953-6
Wolfe, Joanne; Orellana, Liliana; Cook, E Francis et al. (2014) Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial. J Clin Oncol 32:1119-26
Bona, Kira; Dussel, Veronica; Orellana, Liliana et al. (2014) Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage 47:594-603
Rosenberg, Abby R; Orellana, Liliana; Kang, Tammy I et al. (2014) Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer. J Clin Oncol 32:3005-11

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