Investigating the Needs of Childhood Cancer Survivors: The Unreported Experience

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01073735

Enrollment

1178

Registered

2010-02-23

Start date

2010-04-30

Completion date

2011-12-31

Last updated

2012-02-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Childhood Cancer

Keywords

Needs assessment, Health-related needs, Childhood cancer survivors

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

25 Years to No maximum

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.

Design outcomes

Primary

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

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

Countries

United States

Outcome results