Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT01273194
First received: January 7, 2011
Last updated: March 14, 2014
Last verified: September 2013
  Purpose

Background:

- Palliative care, also known as comfort care, is intended to keep a patient comfortable by focusing on pain and symptom management to improve quality of life. Although palliative care has been demonstrated to be beneficial, it is underutilized in children who have been diagnosed with cancer, because current trends favor palliative care primarily at the end of life and in only a small number of patients. Children with cancer likely would benefit from the incorporation of palliative care from the time of diagnosis, but both doctors and families are often reluctant to include it for a variety of reasons. Researchers are interested in understanding these reasons to determine better ways to include palliative care as part of cancer treatment methods in children with cancer.

Objectives:

- To collect information on pediatric oncology patients and their parents attitudes towards palliative care, along with cancer treatment, from the time of diagnosis.

Eligibility:

  • Children and adolescents between 10 and 17 years of age who have been diagnosed with cancer in the past year.
  • Parents of eligible children.

Design:

  • Participants will complete a 30-minute survey about experiences with pain, symptom management, and focus on quality of life in the first month following cancer diagnosis. Child participants will be asked about their views on the importance of quality of life in the beginning of their illness, as well as their attitudes toward symptom-oriented care. Parent participants will be asked questions about their child s illness, which includes understanding, discussion, and impact of illness.
  • Treatment will not be provided as part of this protocol.

Condition
Pediatric Cancer

Study Type: Observational
Official Title: Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents

Resource links provided by NLM:


Further study details as provided by National Institutes of Health Clinical Center (CC):

Enrollment: 12
Study Start Date: December 2010
  Show Detailed Description

  Eligibility

Ages Eligible for Study:   10 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Criteria
  • INCLUSION CRITERIA:

Pediatric Oncology Patients:

  • Current patients receiving clinical care for cancer at one of the participating sites.
  • At least 1 month and no more than 1 year after initial diagnosis.
  • Physically and cognitively able to participate in a 30 minute interview as determined by the primary medical providers.
  • Ability to understand and speak English.
  • Age 10-17 at the time of first diagnosis.
  • Agreement of both parent and child to participate.

Parents:

  • A parent of an eligible child
  • Physically and cognitively able to complete a 30 minute self-administered survey.
  • Ability to read, understand and speak English.
  • Agreement of both parent and child to participate.

EXCLUSION CRITERIA:

  • Inability to speak English.
  • Inability to understand spoken English.
  • Parent s inability to read written English.
  • Lack of agreement of both parent and child to participate.
  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01273194

Locations
United States, Maryland
Johns Hopkins University
Baltimore, Maryland, United States, 21205
National Institutes of Health Clinical Center, 9000 Rockville Pike
Bethesda, Maryland, United States, 20892
United States, Tennessee
St. Jude Childrens Research Hospital
Memphis, Tennessee, United States, 38105
Sponsors and Collaborators
Investigators
Principal Investigator: David Wendler, Ph.D. National Institutes of Health Clinical Center (CC)
  More Information

Additional Information:
Publications:
ClinicalTrials.gov Identifier: NCT01273194     History of Changes
Other Study ID Numbers: 110063, 11-CC-0063
Study First Received: January 7, 2011
Last Updated: March 14, 2014
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Palliative Care
Survey
Quality of Life
Attitudes
Pediatric Cancer

ClinicalTrials.gov processed this record on April 17, 2014