Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

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.

- 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.