Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents
- Palliative care, while demonstrated to be beneficial, is underutilized in pediatric
- The current model in the U.S. favors palliative care involvement primarily at the end
of life and only in a fraction of patients.
- Children with cancer likely would benefit from the incorporation of palliative care
from the time of diagnosis.
- Obstacles to the incorporation of palliative care from the time of diagnosis include
the possibility that the current model provides sufficient care in these areas and the
possibility that families may be averse to early palliative care involvement on the
grounds that it would be intrusive, detract from their goal of cure, and/or lead to a
loss of hope.
- To gather data relevant to evaluating these potential obstacles, we plan to interview
pediatric oncology patients and their parents to determine their views regarding
provision of palliative care, along with cancer therapy, from the time of diagnosis.
- To assess parent and patient attitudes toward the integration of palliative care
in pediatric oncology patients from the time of diagnosis.
- To develop a survey instrument that can reliably assess the views of pediatric
oncology patients and their parents with regard to patients' symptom burden and
management at the beginning of cancer therapy as well as attitudes toward early
integration of palliative care with oncology care.
- Secondary/Specific Objectives
- To assess the degree and effect of negative symptoms in children with cancer in
the beginning of cancer therapy as well as the extent to which pediatric patients'
symptoms and suffering at this time are being adequately managed.
- To assess the emphasis that families place on quality of life in symptom
management and treatment decision making as well as the satisfaction with the
degree of attention given to quality of life by the medical team.
- To assess patient and parent attitudes toward palliative care in general and
receptivity toward pediatric palliative care team involvement from the time of
- To assess understanding of prognosis and its relationship to parent and patient
attitudes toward the integration of palliative care in pediatric oncology care
from the time of diagnosis.
- To assess concordance between parents and patients in their attitudes toward the
integration of palliative care in pediatric oncology patients from the time of
-Patients eligible for inclusion will be children diagnosed with an oncologic disease at
least 1 month and no greater than 1 year prior with age at diagnosis of 10 to 17 years. Both
patient and parent must agree to participate to be eligible for inclusion.
- Surveys will be administered to consenting patient/parent pairs with the parent
completing a written survey while the patient is surveyed in the absence of the
- Total enrollment will be a minimum of 70 subject pairs and a maximum of 110 subject
pairs with a target goal of 100 subject pairs enrolled over a 6 month period.
Data collected from responses to the surveys will be analyzed at the conclusion of the
survey period to assess for individual content as well as concordance between the patients
and their parents.
David Wendler, Ph.D.
National Institutes of Health Clinical Center (CC)
United States: Federal Government
|National Institutes of Health Clinical Center, 9000 Rockville Pike||Bethesda, Maryland 20892|
|Johns Hopkins University||Baltimore, Maryland 21205|
|St. Jude Childrens Research Hospital||Memphis, Tennessee 38105|