Investigating the Needs of Childhood Cancer Survivors: The Unreported Experience

Completed

• Conditions: Childhood Cancer

• Registration Number: NCT01073735
• Lead Sponsor: 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.

Study Timeline

• Study First Submitted: 2010-02-22
• Study First Submitted QC: 2010-02-22
• Study First Posted: 2010-02-23
• Study Start: 2010-04
• Primary Completion: 2011-12
• Study Completion: 2011-12
• Status Verified: 2012-02
• Last Update Submitted: 2012-02-08
• Last Update Posted: 2012-02-09

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 1178

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.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
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 Measures

Name	Time	Method
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

Trial Locations

Locations (1)

St. Jude Children's Research Hospital; 🇺🇸 Memphis, Tennessee, United States