OBJECTIVE: Neurofibromatosis (NF) 1 and 2 have distinct appearance effects, yet little research has examined patients' appearance concerns. We assessed appearance concerns and self-consciousness, self-esteem, and loneliness among women with NF. METHODS: Women with NF1 (n = 79) and NF2 (n = 48) completed the Derriford Appearance Scale to assess appearance concerns and sexual/bodily and social self-consciousness, Rosenberg Self-Esteem Scale, and UCLA Loneliness Scale. Women's appearance concerns were coded to determine whether they were NF-related and whether psychosocial factors contributed to the concerns. RESULTS: A total of 85% of women reported appearance concerns, many of which were NF-related and attributed to psychosocial factors. Women with NF1 reported significantly more sexual/bodily self-consciousness but similar levels of social self-consciousness compared with women with NF2. Significantly higher sexual/bodily self-consciousness was found among married/cohabiting women regardless of NF group. Compared with general population norms and breast cancer survivors (BCS), women with NF1 reported significantly greater sexual/bodily and social self-consciousness. Women with NF2 reported less sexual/bodily self-consciousness compared with population norms, yet tended to report greater sexual/bodily self-consciousness than BCS. Women with NF2 reported significantly greater social self-consciousness compared with population norms and BCS. For both NF1 and NF2, higher levels of sexual/bodily and social self-consciousness were related to lower self-esteem and higher levels of social self-consciousness to more loneliness. CONCLUSIONS: Appearance concerns are prevalent, and social self-consciousness is high, among women with NF1 and NF2. Women with NF1 compared with NF2 experience more sexual/bodily self-consciousness. Providers should assess the impact of NF on women's self-perceptions and address sexual, body image, and social concerns.
OBJECTIVE:Neurofibromatosis (NF) 1 and 2 have distinct appearance effects, yet little research has examined patients' appearance concerns. We assessed appearance concerns and self-consciousness, self-esteem, and loneliness among women with NF. METHODS:Women with NF1 (n = 79) and NF2 (n = 48) completed the Derriford Appearance Scale to assess appearance concerns and sexual/bodily and social self-consciousness, Rosenberg Self-Esteem Scale, and UCLA Loneliness Scale. Women's appearance concerns were coded to determine whether they were NF-related and whether psychosocial factors contributed to the concerns. RESULTS: A total of 85% of women reported appearance concerns, many of which were NF-related and attributed to psychosocial factors. Women with NF1 reported significantly more sexual/bodily self-consciousness but similar levels of social self-consciousness compared with women with NF2. Significantly higher sexual/bodily self-consciousness was found among married/cohabiting women regardless of NF group. Compared with general population norms and breast cancer survivors (BCS), women with NF1 reported significantly greater sexual/bodily and social self-consciousness. Women with NF2 reported less sexual/bodily self-consciousness compared with population norms, yet tended to report greater sexual/bodily self-consciousness than BCS. Women with NF2 reported significantly greater social self-consciousness compared with population norms and BCS. For both NF1 and NF2, higher levels of sexual/bodily and social self-consciousness were related to lower self-esteem and higher levels of social self-consciousness to more loneliness. CONCLUSIONS: Appearance concerns are prevalent, and social self-consciousness is high, among women with NF1 and NF2. Women with NF1 compared with NF2 experience more sexual/bodily self-consciousness. Providers should assess the impact of NF on women's self-perceptions and address sexual, body image, and social concerns.
Authors: Elyse R Park; Kelly B Smith; Vanessa L Merker; Alona Muzikansky; Ana-Maria Vranceanu; Daphne L Wang; Scott R Plotkin Journal: J Neurooncol Date: 2015-01-06 Impact factor: 4.130