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Childhood Cancer Survivor Survey
This study is currently recruiting participants.
Verified by M.D. Anderson Cancer Center, November 2008
Sponsored by: M.D. Anderson Cancer Center
Information provided by: M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier: NCT00788476
  Purpose

Objectives:

  1. To explore current lifestyle practices, health status, and quality of life among childhood cancer survivors and parent/guardians who are identified as "primary caregivers."
  2. To explore childhood cancer survivors' and "primary caregivers'" awareness of future health risks.
  3. To explore interest in various lifestyle interventions and delivery channels among childhood cancer survivors and their "primary caregivers."
  4. To explore factors which may serve as mediators or moderators of future lifestyle interventions that target childhood cancer survivors and their "primary caregivers," e.g., strength of the caregiver-child bond, geographic distance from one another, and level of education.

Condition Intervention
Cancer
Other: Survey

MedlinePlus related topics: Cancer Caregivers
U.S. FDA Resources
Study Type: Observational
Study Design: Case-Only, Prospective
Official Title: Needs Assessment Survey in Childhood Cancer Survivors and Their Parents

Further study details as provided by M.D. Anderson Cancer Center:

Primary Outcome Measures:
  • To determine the need for, as well as interest in, lifestyle intervention programs for childhood cancer survivors (and their parents). [ Time Frame: 2 Years ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
  • To provide information for future programs that might be offered through MD Anderson. [ Time Frame: 2 Years ] [ Designated as safety issue: No ]

Biospecimen Retention:   None Retained

Biospecimen Description:

Estimated Enrollment: 600
Study Start Date: November 2008
Estimated Primary Completion Date: November 2010 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
1
Childhood Cancer Survivors
Other: Survey
Surveys mailed to guardians of survivors who are currently under age 18
2
Primary Caregivers
Other: Survey
Surveys mailed to guardians of survivors who are currently under age 18

Detailed Description:

A mailed survey will be conducted that will assess the health behaviors (diet, exercise, and tobacco-use) of childhood cancer survivors, and the behaviors of identified "primary caregivers" (see definition under inclusion criteria). In addition, these surveys will assess awareness of longterm health risks, quality of life (QOL), strength of the child-caregiver bond, body image, body weight status, functional status, barriers to lifestyle change, and interest in various lifestyle interventions and potential channels for delivery. Mailed surveys (with telephone follow-up) will be sent to MDACC childhood cancer survivors diagnosed from 1998 - 2007 who are survivors of central nervous system (CNS) tumors, sarcomas, lymphoma or leukemia.

  Eligibility

Ages Eligible for Study:   8 Years to 28 Years
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population

Childhood cancer survivors between ages of 8 and 28 years of age and their primary caregivers.

Criteria

Inclusion Criteria:

  1. Inclusion criteria for childhood cancer survivors: 1) diagnosed between 1998-2007 with central nervous system tumors, sarcomas, leukemia, or lymphoma; 2) off active treatment for at least one year, and alive with no evidence of progressive disease; 3) currently between age 8 (i.e., at an age at which they could be reasonably expected to complete a survey and where validated instruments exist) and 28 (cutpoint based on the possibility that individuals were almost 18 in 1998 and decade has since passed); and 4) able to speak or read English.
  2. Inclusion criteria for parents/guardians: 1) parents/guardians of childhood cancer survivors diagnosed from 1998-2007 with central nervous system tumors, sarcomas, leukemia, or lymphoma who completed active treatment at least 1-year ago and who currently are alive with no evidence of disease; 2) parents/guardians of a survivor who is currently 2-28 years of age; 3) self-identified as the current "primary caregiver" of the survivor if the survivor is age 2-17 OR identified by the survivor as the "primary caregiver" if the survivor is age 18-28; and 4) able to speak or read English.

Exclusion Criteria:

  1. Exclusion criteria for childhood cancer survivors: 1) diagnosed with cancers other than central nervous system tumors, sarcomas, leukemia, or lymphoma; 2) diagnosed with cancer either prior to 1998 or after 2007; 3) currently on treatment; 4) currently diagnosed with progressive cancer; 5) deceased; 6) under age 8 or over age 28; or 7) non-English speaking or reading.
  2. Exclusion criteria for parent/guardians: 1) parent/guardians of childhood cancer survivors who were diagnosed with cancer before 1998 or after 2007 OR with cancers other than CNS tumors, sarcomas, leukemia, or lymphoma OR whose children are currently on treatment, have progressive cancer or are deceased OR whose children are currently <2 or >28 years old; 2) non-English speaking/reading; or 3) do not self-identify as being the current "primary caregiver" of childhood cancer survivors ages 2-17 or are not identified as being the primary caregiver of childhood cancer survivors who are age 18+.
  Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00788476

Contacts
Contact: Wendy Demark-Wahnefried, PhD 713-563-7366

Locations
United States, Texas
UT MD Anderson Cancer Center Recruiting
Houston, Texas, United States, 77030
Principal Investigator: Wendy Demark-Wahnefried, PhD            
Sponsors and Collaborators
M.D. Anderson Cancer Center
Investigators
Principal Investigator: Wendy Demark-Wahnefried, PhD UT MD Anderson Cancer Center
  More Information

UT MD Anderson Cancer Center website  This link exits the ClinicalTrials.gov site

Responsible Party: UT MD Anderson Cancer Center ( Wendy Demark-Wahnefried, PhD/Professor )
Study ID Numbers: 2008-0490
Study First Received: November 7, 2008
Last Updated: November 7, 2008
ClinicalTrials.gov Identifier: NCT00788476  
Health Authority: United States: Institutional Review Board

Keywords provided by M.D. Anderson Cancer Center:
Needs Assessment Survey
Childhood Cancer Survivors
Parents
Primary Caregiver
Survey

ClinicalTrials.gov processed this record on January 16, 2009