Childhood Cancer Survivor Survey
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Purpose
Objectives:
- To explore current lifestyle practices, health status, and quality of life among childhood cancer survivors and parent/guardians who are identified as "primary caregivers."
- To explore childhood cancer survivors' and "primary caregivers'" awareness of future health risks.
- To explore interest in various lifestyle interventions and delivery channels among childhood cancer survivors and their "primary caregivers."
- 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 |
- Patient Response Rate to Survey [ Time Frame: 2 Years ] [ Designated as safety issue: No ]
| Estimated Enrollment: | 600 |
| Study Start Date: | November 2008 |
| Estimated Primary Completion Date: | November 2014 (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 |
Childhood cancer survivors between ages of 8 and 28 years of age and their primary caregivers.
Inclusion Criteria:
- 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.
- 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:
- 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.
- 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| United States, Texas | |
| UT MD Anderson Cancer Center | |
| Houston, Texas, United States, 77030 | |
| 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 11, 2012 |
| 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 May 23, 2013