Quality of Friendships in Children With Neurofibromatosis

NCT00508235 | Completed

• 1 other identifier: 2004-0791
• Study Type: observational
• Target: 61
• Locations: 1 country
• Sites: 1

Brief Summary

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:

1. 1.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.
2. 2.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.

Conditions

Neurofibromatosis

Keywords

Neurofibromatosis; Quality of Friendships; Disease Severity; Questionnaire; NF-1

Outcome Measures

Primary Outcomes (1)

• Disease severity scale and Friendship Quality Questionnaire (FQQ)

  Questionnaire completion by patient and chart review by doctor for disease severity scoring.

Study Arms (1)

Quality of Friendships

Patients with Neurofibromatosis, type 1 (NF-1) between the ages of 8 and 18 years old.

Behavioral: Questionnaire

Interventions

Questionnaire BEHAVIORAL

Questionnaire about the patient's relationship with their best friend.

Also known as: Survey

Quality of Friendships

Eligibility Criteria

• Age: 8 Years - 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Study participants with Neurofibromatosis, type 1 (NF-1) between the ages of 8 and 18 years old.

You may qualify if:

• \) 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.

Sponsors & Collaborators

• M.D. Anderson Cancer Center: lead

Study Sites (1)

U.T.M.D. Anderson Cancer Center

Houston, Texas, 77030, United States

Location

Related Links

• UT MD Anderson Cancer Center website

MeSH Terms

Conditions

Neurofibromatoses

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

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; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Bartlett D. Moore, PhD

  M.D. Anderson Cancer Center

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 26, 2007
• First Posted: July 27, 2007
• Study Start: December 1, 2004
• Primary Completion: July 1, 2009
• Study Completion: July 1, 2009
• Last Updated: August 1, 2012

Record last verified: 2012-07

Locations

US (1)