Investigating the Needs of Childhood Cancer Survivors: The Unreported Experience
Summary
This feasibility study will determine the psychometric adequacy of a newly developed instrument - Needs Assessment Survey of Adult Childhood Cancer Survivors. 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
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 oversampling 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 Design
Allocation: Non-Randomized, Endpoint Classification: Efficacy Study, Intervention Model: Single Group Assignment, Masking: Open Label
Conditions
Childhood Cancer
Intervention
Needs Assessment Survey of Adult Childhood Cancer Survivors
Location
St. Jude Children's Research Hospital
Memphis
Tennessee
United States
38105
Status
Recruiting
Source
St. Jude Children's Research Hospital
Results (where available)
Links
- Source: http://clinicaltrials.gov/show/NCT01073735
- Information obtained from ClinicalTrials.gov on July 15, 2010
Published on BioPortfolio: 2014-08-27T03:15:42-0400
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Medical and Biotech [MESH] Definitions
Adult Survivors Of Child Adverse Events
Persons who experienced traumatic events during childhood.
Urea Cycle Disorders, Inborn
Rare congenital metabolism disorders of the urea cycle. The disorders are due to mutations that result in complete (neonatal onset) or partial (childhood or adult onset) inactivity of an enzyme, involved in the urea cycle. Neonatal onset results in clinical features that include irritability, vomiting, lethargy, seizures, NEONATAL HYPOTONIA; RESPIRATORY ALKALOSIS; HYPERAMMONEMIA; coma, and death. Survivors of the neonatal onset and childhood/adult onset disorders share common risks for ENCEPHALOPATHIES, METABOLIC, INBORN; and RESPIRATORY ALKALOSIS due to HYPERAMMONEMIA.
Schizophrenia, Childhood
An obsolete concept, historically used for childhood mental disorders thought to be a form of schizophrenia.
Glycogen Storage Disease Type Ii
An autosomal recessively inherited glycogen storage disease caused by GLUCAN 1,4-ALPHA-GLUCOSIDASE deficiency. Large amounts of GLYCOGEN accumulate in the LYSOSOMES of skeletal muscle (MUSCLE, SKELETAL); HEART; LIVER; SPINAL CORD; and BRAIN. Three forms have been described: infantile, childhood, and adult. The infantile form is fatal in infancy and presents with hypotonia and a hypertrophic cardiomyopathy (CARDIOMYOPATHY, HYPERTROPHIC). The childhood form usually presents in the second year of life with proximal weakness and respiratory symptoms. The adult form consists of a slowly progressive proximal myopathy. (From Muscle Nerve 1995;3:S61-9; Menkes, Textbook of Child Neurology, 5th ed, pp73-4)
Feeding And Eating Disorders Of Childhood
Mental disorders related to feeding and eating that are usually diagnosed in infancy or early childhood.
