Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents
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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 |
Eligibility| Ages Eligible for Study: | 10 Years and older |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | Yes |
- 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| Contact: David Wendler, Ph.D. | (301) 435-8726 | dwendler@mail.cc.nih.gov |
| United States, Maryland | |
| Johns Hopkins University | Recruiting |
| Baltimore, Maryland, United States, 21205 | |
| National Institutes of Health Clinical Center, 9000 Rockville Pike | Recruiting |
| Bethesda, Maryland, United States, 20892 | |
| Contact: For more information at the NIH Clinical Center contact Patient Recruitment and Public Liaison Office (PRPL) 800-441-1222 ext TTY8864111010 prpl@mail.cc.nih.gov | |
| United States, Tennessee | |
| St. Jude Childrens Research Hospital | Recruiting |
| Memphis, Tennessee, United States, 38105 | |
| 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: | January 19, 2013 |
| 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 May 23, 2013