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Needs Assessment Survey in Childhood Cancer Survivors and Their Parents


N/A
8 Years
34 Years
Open (Enrolling)
Both
Cancer

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Trial Information

Needs Assessment Survey in Childhood Cancer Survivors and Their Parents


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.


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+.

Type of Study:

Observational

Study Design:

Observational Model: Case-Only, Time Perspective: Prospective

Outcome Measure:

Patient Response Rate to Survey

Outcome Time Frame:

2 Years

Safety Issue:

No

Principal Investigator

Joann L. Ater, MD, BA

Investigator Role:

Principal Investigator

Investigator Affiliation:

UT MD Anderson Cancer Center

Authority:

United States: Institutional Review Board

Study ID:

2008-0490

NCT ID:

NCT00788476

Start Date:

November 2008

Completion Date:

Related Keywords:

  • Cancer
  • Needs Assessment Survey
  • Childhood Cancer Survivors
  • Parents
  • Primary Caregiver
  • Survey

Name

Location

UT MD Anderson Cancer CenterHouston, Texas  77030