Investigating the Needs of Childhood Cancer Survivors: The Unreported Experience

St. Jude Children's Research Hospital

Status: Completed

Conditions: Childhood Cancer

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT01073735

INSURE

R21CA142921 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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

Full 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.

Enrollment: 1,178 patients

Sex: All

Ages: 25+ years old

Volunteers: No Healthy Volunteers

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.

Trial design

1,178 participants in 1 patient group

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.