Psychological Adjustment of Children and Adolescents with Neurofibromatosis

We made a preliminary study of the psychological adjustment of children and adolescents with neurofibromatosis (NF), or so-called Elephant Man's Disease. Twenty-four participants, both male and female aged 8 to 18 years, were identified from genetics clinical records; interviewed by telephone; and asked to complete measures of self-concept, adjustment, social support, and perceived NF symptom severity. Data from the 17 families who agreed to participate and returned usable forms yielded mixed support for hypothesized relations among NF severity, social support, and measures of adjustment, with source of report being a key factor. Implications of these preliminary findings for health care professionals working with NF patients are discussed.