Childhood Cancer Survivor Survey

This study has been completed.
Sponsor:
Information provided by (Responsible Party):
M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier:
NCT00788476
First received: November 7, 2008
Last updated: October 9, 2013
Last verified: October 2013
  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

Study Type: Observational
Study Design: Observational Model: Case-Only
Time Perspective: Prospective
Official Title: Needs Assessment Survey in Childhood Cancer Survivors and Their Parents

Resource links provided by NLM:


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

Primary Outcome Measures:
  • Patient Response Rate to Survey [ Time Frame: 2 Years ] [ Designated as safety issue: No ]

Enrollment: 167
Study Start Date: October 2008
Primary Completion Date: August 2013 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
Childhood Cancer Survivors Other: Survey
Survey packets to adult (>18 years old) childhood cancer survivors who return to MDACC for follow-up appointments within the next 12-months and conduct a mailed survey with the remaining participants and their "primary caregivers" i.e. guardians of survivors who are currently under age 18.
Other Name: Questionnaire
Primary Caregivers Other: Survey
Survey packets to adult (>18 years old) childhood cancer survivors who return to MDACC for follow-up appointments within the next 12-months and conduct a mailed survey with the remaining participants and their "primary caregivers" i.e. guardians of survivors who are currently under age 18.
Other Name: Questionnaire

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 34 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 1992-2007 with central nervous system tumors, sarcomas, leukemia, or lymphoma; 2) off active treatment for at least six-months, 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 34 (cutpoint based on the possibility that individuals were almost 18 in 1992 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 1992-2007 with central nervous system tumors, sarcomas, leukemia, or lymphoma who completed active treatment at least six-months ago and who currently are alive with no evidence of disease; 2) parents/guardians of a survivor who is currently 2-34 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 18-34; 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 1992 or after 2007; 3) currently on treatment; 4) currently diagnosed with progressive cancer; 5) deceased; 6) under age 8 or over age 34; 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 1992 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 >34 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
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00788476

Locations
United States, Texas
UT MD Anderson Cancer Center
Houston, Texas, United States, 77030
Sponsors and Collaborators
M.D. Anderson Cancer Center
Investigators
Principal Investigator: Joann L. Ater, MD, BA UT MD Anderson Cancer Center
  More Information

Additional Information:
No publications provided

Responsible Party: M.D. Anderson Cancer Center
ClinicalTrials.gov Identifier: NCT00788476     History of Changes
Other Study ID Numbers: 2008-0490
Study First Received: November 7, 2008
Last Updated: October 9, 2013
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 July 29, 2014