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

NCT01273194 | Completed

• 2 other identifiers: 11006311-CC-0063
• Study Type: observational
• Target: 12
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Pediatric Cancer

Keywords

Palliative Care; Survey; Quality of Life; Attitudes; Pediatric Cancer

Eligibility Criteria

• Age: 10 Years - 99 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• 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.

You may not qualify if:

• 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.

Sponsors & Collaborators

• National Institutes of Health Clinical Center (CC): lead

Study Sites (1)

National Institutes of Health Clinical Center, 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Harris MB. Palliative care in children with cancer: which child and when? J Natl Cancer Inst Monogr. 2004;(32):144-9. doi: 10.1093/jncimonographs/lgh007.

  PMID: 15263058 BACKGROUND

• Gatta G, Capocaccia R, Coleman MP, Ries LA, Berrino F. Childhood cancer survival in Europe and the United States. Cancer. 2002 Oct 15;95(8):1767-72. doi: 10.1002/cncr.10833.

  PMID: 12365026 BACKGROUND

• Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000 Feb 3;342(5):326-33. doi: 10.1056/NEJM200002033420506.

  PMID: 10655532 BACKGROUND

MeSH Terms

Conditions

Neoplasms; Behavior

Study Officials

• David Wendler, Ph.D.

  National Institutes of Health Clinical Center (CC)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: OTHER
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 7, 2011
• First Posted: January 10, 2011
• Study Start: December 20, 2010
• Study Completion: September 8, 2015
• Last Updated: October 6, 2017

Record last verified: 2015-09-08

Locations

US (1)