Investigating the Needs of Childhood Cancer Survivors: The Unreported Experience

Investigating the Needs of Childhood Cancer Survivors: The Unreported Experience

Sponsors

Lead Sponsor: St. Jude Children's Research Hospital

Collaborator: National Cancer Institute (NCI)

Source St. Jude Children's Research Hospital
Brief Summary

This feasibility study will determine the psychometric adequacy of a newly developed instrument - Childhood Cancer Survivor Study Needs Assessment Questionnaire (CCSS-NAQ). Additionally, the study will explore the feasibility of selected study methods -- sample selection, length of time to complete recruitment, and response rates - in order to inform a larger national periodic survey of adult survivors' health related needs

Detailed Description

This study will focus on the following primary and secondary objectives: 1. Examine the construct validity, short-term stability, internal consistency and item-response performance of a health-related needs assessment self-report instrument for adult childhood cancer survivors 2. Inform future sample stratification by over-sampling minority and rural-dwelling survivors to enhance the heterogeneity of the respondent pool; 3. Describe the met and unmet health-related needs and their covariates in a large, stratified, random sample of childhood cancer survivors; 4. Evaluate the sample selection methods, length of time to complete recruitment, and response rates in the study sample.

Overall Status Completed
Start Date April 2010
Completion Date December 2011
Primary Completion Date December 2011
Study Type Observational
Primary Outcome
Measure Time Frame
Examine the construct validity, internal consistency, item-response performance, and short-term stability of a health-related needs assessment self-report instrument for adult childhood cancer survivors. July 2011
Secondary Outcome
Measure Time Frame
Inform future sample stratification by over-sampling minority and rural-dwelling survivors to enhance the heterogeneity of the respondent pool. July 2011
Describe the met and unmet needs of childhood cancer survivors and their important covariates in a large, stratified random sample of childhood cancer survivors. July 2011
Evaluate the sample selection methods, length of time to complete recruitment, and response rates in the study sample. July 2011
Enrollment 1178
Condition
Eligibility

Sampling Method: Probability Sample

Criteria:

Inclusion Criteria: 1. Living CCSS participant 2. Age 25 years or older on December 31, 2009 3. History of successful independent (non-surrogate) response to previous CCSS surveys (Flesch-Kincaid reading level for non-medical items established at 4th-6th grade). Exclusion Criteria: Received treatment for pediatric malignancy at St. Jude Children's Research Hospital.

Gender: All

Minimum Age: 25 Years

Maximum Age: N/A

Healthy Volunteers: No

Overall Official
Last Name Role Affiliation
Cheryl Cox, RN, PhD Principal Investigator St. Jude Children's Research Hospital
Location
Facility: St. Jude Children's Research Hospital
Location Countries

United States

Verification Date

February 2012

Responsible Party

Type: Sponsor

Keywords
Has Expanded Access No
Arm Group

Label: Cancer Survivors

Description: Examine the construct validity, short-term stability, internal consistency and item-response performance of a health-related needs assessment self-report instrument for adult childhood cancer survivors.

Study Design Info

Observational Model: Cohort

Time Perspective: Prospective

Source: ClinicalTrials.gov