Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

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Brief Title

Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

Official Title

Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

Brief Summary

      This study aims to understand predictors of adaptation and quality of life among adults
      affected with neurofibromatosis type 1 (NF1) and autosomal dominant neurocutaneous condition.
      NF1 carries a significant psychosocial burden for affected individuals. Aspects of NF1 that
      are especially challenging include the unpredictable nature of the disease, variability in
      severity of symptoms and medical complications, uncertainty in progression, and vulnerability
      to stigmatization due to the highly visible and often cosmetically disfiguring features of
      the condition. The literature suggests that because of these and other challenges posed by
      NF1, affected individuals may struggle to adapt to their condition and, consequently,
      experience poor quality of life. In this study, Lazarus and Folkman s Tranactional Model of
      Stress and Coping is used as a framework to conceptualize adaptation and quality of life to
      NF1. A cross-sectional design with quantitative methodology will be employed to investigate
      the relationships of appraisals and stigma as predictors of adaptation and quality of life.
      Adults affected with NF1 will be recruited via regional and national NF organizations and
      websites, as well as through ongoing NIH clinical research protocols for NF1. Eligible
      participants will be invited to complete a web-based, self-administered survey....
    

Detailed Description

      This study aims to understand predictors of adaptation and quality of life among adults
      affected with neurofibromatosis type 1 (NF1) and autosomal dominant neurocutaneous condition.
      NF1 carries a significant psychosocial burden for affected individuals. Aspects of NF1 that
      are especially challenging include the unpredictable nature of the disease, variability in
      severity of symptoms and medical complications, uncertainty in progression, and vulnerability
      to stigmatization due to the highly visible and often cosmetically disfiguring features of
      the condition. The literature suggests that because of these and other challenges posed by
      NF1, affected individuals may struggle to adapt to their condition and, consequently,
      experience poor quality of life. In this study, Lazarus and Folkman s Transactional Model of
      Stress and Coping is used as a framework to conceptualize adaptation and quality of life to
      NF1. A cross-sectional design with quantitative methodology will be employed to investigate
      the relationships of appraisals and stigma as predictors of adaptation and quality of life.
      Adults affected with NF1 will be recruited via regional and national NF organizations and
      websites, as well as through ongoing NIH clinical research protocols for NF1. Eligible
      participants will be invited to complete a web-based, self-administered survey.
    


Study Type

Observational




Condition

Neurofibromatosis Type 1



Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information



Estimated Enrollment

645

Start Date

May 15, 2008

Completion Date

November 27, 2015


Eligibility Criteria

        -  INCLUSION CRITERIA:

        Adult men and women at least 18 years of age who self-report as having NF1.

        Participants must be able to read and write in English.

        Individuals of all ethnic, religious, socioeconomic, and educational backgrounds and from a
        variety of geographic locations in the United States will be included.

        EXCLUSION CRITERIA:

        Children under the age of 18.

        Inability to read and write in English.
      

Gender

All

Ages

18 Years - N/A

Accepts Healthy Volunteers

No

Contacts

Barbara B Biesecker, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT00684398

Organization ID

999908144

Secondary IDs

08-HG-N144

Responsible Party

Sponsor

Study Sponsor

National Human Genome Research Institute (NHGRI)


Study Sponsor

Barbara B Biesecker, Principal Investigator, National Human Genome Research Institute (NHGRI)


Verification Date

November 27, 2015