title: Appearance concerns among women with neurofibromatosis: examining sexual/bodily and social self-consciousness.
abstract: 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.affiliation: Department of Obstetrics & Gynaecology, University of British Columbia, BC, Canada.
authors.forename: Kelly B
authors.initials: KB
authors.lastname: Smith
authors.forename: Daphne L
authors.initials: DL
authors.lastname: Wang
authors.forename: Scott R
authors.initials: SR
authors.lastname: Plotkin
authors.forename: Elyse R
authors.initials: ER
authors.lastname: Park
mesh_terms: D000328:Adult; D001828:Body Image / Q000523:psychology*; D016022:Case-Control Studies; D005260:Female; D006801:Humans; D008132:Loneliness / Q000523:psychology*; D008875:Middle Aged; D009456:Neurofibromatosis 1 / Q000523:psychology*; D016518:Neurofibromatosis 2 / Q000523:psychology*; D012649:Self Concept; D012725:Sexual Behavior / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: appearance concerns; breast cancer; loneliness; neurofibromatosis; oncology; self-esteem