Quality of Friendships in Children With Neurofibromatosis
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Purpose
The aim of this study is to determine if children with a higher disease severity have lower quality friendships than children who are less severely affected and children who are unaffected. Researchers will test the hypothesis that the quality of friendships is inversely related to their disease severity.
Specific Aims:
- To use the FQQ to determine if the quality of friendships in children with NF1 is lower than the quality of friendships in unaffected children.
- To use a disease severity scale and the FQQ to determine if children who are less severely affected have higher friendship qualities than children who are more severely affected.
| Condition | Intervention |
|---|---|
|
Neurofibromatosis |
Behavioral: Questionnaire |
| Study Type: | Observational |
| Study Design: | Observational Model: Case-Only Time Perspective: Prospective |
| Official Title: | Quality of Friendships in Children With Neurofibromatosis: Relationship to Disease Severity |
- Disease severity scale and Friendship Quality Questionnaire (FQQ) [ Time Frame: Questionnaire completion by patient and chart review by doctor for disease severity scoring. ] [ Designated as safety issue: No ]
| Enrollment: | 61 |
| Study Start Date: | December 2004 |
| Study Completion Date: | July 2009 |
| Primary Completion Date: | July 2009 (Final data collection date for primary outcome measure) |
| Groups/Cohorts | Assigned Interventions |
|---|---|
|
Quality of Friendships
Patients with Neurofibromatosis, type 1 (NF-1) between the ages of 8 and 18 years old.
|
Behavioral: Questionnaire
Questionnaire about the patient's relationship with their best friend.
Other Name: Survey
|
Detailed Description:
You (your) child will be asked to complete a short questionnaire (40 questions) about their relationship with their best friend. Doctors will review your (child's) medical chart to find out how severe the disease is, so that this may be compared to the answers you have (your child has) given on the friendship questionnaire.
This is an Investigational Study. About 90-100 children and adolescents with NF-1 will be asked to take part in this study. All will be enrolled at M.D. Anderson.
Eligibility| Ages Eligible for Study: | 8 Years to 18 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
Study participants with Neurofibromatosis, type 1 (NF-1) between the ages of 8 and 18 years old.
Inclusion Criteria:
1) Patients with a clinical diagnosis of neurofibromatosis, type 1 (NF-1) who are between the ages of 8 and 18 years will be eligible. Patients must be English or Spanish speaking (test instrument will be translated into Spanish), and be able to read.
Exclusion Criteria:
Contacts and Locations| United States, Texas | |
| U.T.M.D. Anderson Cancer Center | |
| Houston, Texas, United States, 77030 | |
| Principal Investigator: | Bartlett D. Moore, PhD | M.D. Anderson Cancer Center |
More Information
Additional Information:
No publications provided
| Responsible Party: | M.D. Anderson Cancer Center |
| ClinicalTrials.gov Identifier: | NCT00508235 History of Changes |
| Other Study ID Numbers: | 2004-0791 |
| Study First Received: | July 26, 2007 |
| Last Updated: | July 31, 2012 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by M.D. Anderson Cancer Center:
|
Neurofibromatosis Quality of Friendships Disease Severity Questionnaire NF-1 |
Additional relevant MeSH terms:
|
Neurofibromatoses Neurofibroma Nerve Sheath Neoplasms Neoplasms, Nerve Tissue Neoplasms by Histologic Type Neoplasms |
Neoplastic Syndromes, Hereditary Neurocutaneous Syndromes Nervous System Diseases Heredodegenerative Disorders, Nervous System Neurodegenerative Diseases Genetic Diseases, Inborn |
ClinicalTrials.gov processed this record on May 23, 2013