{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T09:37:37Z","timestamp":1790761057786,"version":"4.1.0"},"reference-count":29,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2013,7,19]],"date-time":"2013-07-19T00:00:00Z","timestamp":1374192000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Psycho-Oncology"],"published-print":{"date-parts":[[2013,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Neurofibromatosis (NF) 1 and 2 have distinct appearance effects, yet little research has examined patients' appearance concerns. We assessed appearance concerns and self\u2010consciousness, self\u2010esteem, and loneliness among women with NF.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Women with NF1 (<jats:italic>n<\/jats:italic>\u2009=\u200979) and NF2 (<jats:italic>n<\/jats:italic>\u2009=\u200948) completed the Derriford Appearance Scale to assess appearance concerns and sexual\/bodily and social self\u2010consciousness, Rosenberg Self\u2010Esteem Scale, and UCLA Loneliness Scale. Women's appearance concerns were coded to determine whether they were NF\u2010related and whether psychosocial factors contributed to the concerns.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 85% of women reported appearance concerns, many of which were NF\u2010related and attributed to psychosocial factors. Women with NF1 reported significantly more sexual\/bodily self\u2010consciousness but similar levels of social self\u2010consciousness compared with women with NF2. Significantly higher sexual\/bodily self\u2010consciousness 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\u2010consciousness. Women with NF2 reported less sexual\/bodily self\u2010consciousness compared with population norms, yet tended to report greater sexual\/bodily self\u2010consciousness than BCS. Women with NF2 reported significantly greater social self\u2010consciousness compared with population norms and BCS. For both NF1 and NF2, higher levels of sexual\/bodily and social self\u2010consciousness were related to lower self\u2010esteem and higher levels of social self\u2010consciousness to more loneliness.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Appearance concerns are prevalent, and social self\u2010consciousness is high, among women with NF1 and NF2. Women with NF1 compared with NF2 experience more sexual\/bodily self\u2010consciousness. Providers should assess the impact of NF on women's self\u2010perceptions and address sexual, body image, and social concerns. Copyright \u00a9 2013 John Wiley &amp; Sons, Ltd.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pon.3350","type":"journal-article","created":{"date-parts":[[2013,7,19]],"date-time":"2013-07-19T11:14:12Z","timestamp":1374232452000},"page":"2711-2719","source":"Crossref","is-referenced-by-count":32,"title":["Appearance concerns among women with neurofibromatosis: examining sexual\/bodily and social self\u2010consciousness"],"prefix":"10.1002","volume":"22","author":[{"given":"Kelly B.","family":"Smith","sequence":"first","affiliation":[{"name":"Department of Obstetrics &amp; Gynaecology University of British Columbia  BC Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daphne L.","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Neurology and Cancer Center Massachusetts General Hospital\/Harvard Medical School  MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Scott R.","family":"Plotkin","sequence":"additional","affiliation":[{"name":"Department of Neurology and Cancer Center Massachusetts General Hospital\/Harvard Medical School  MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elyse R.","family":"Park","sequence":"additional","affiliation":[{"name":"Department of Psychiatry Benson\u2010Henry Institute for Mind Body Medicine, Massachusetts General Hospital\/Harvard Medical School  MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,7,19]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"National Institute of Neurological Disorders and Stroke (NINDS).Neurofibromatosis Fact Sheet.2011.http:\/\/www.ninds.nih.gov\/disorders\/neurofibromatosis\/detail_neurofibromatosis.htm. 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Part 2: NF2 and schwannomatosis","volume":"6","author":"Lu\u2010Emerson C","year":"2009","journal-title":"Rev Neurol Dis"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.59.5.759"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1054\/bjps.2001.3550"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1159\/000337548"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.31422"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.137.11.1421"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1159\/000187594"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/13548506.2010.516363"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(95)00076-3"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0272-7358(00)00056-8"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1740-1445(03)00005-6"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/135485099106270"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1348\/135910705X26128"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.2165\/00128071-200304040-00004"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.3322\/canjclin.41.2.112"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2012.85"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1348\/135910700168865"},{"key":"e_1_2_8_20_1","volume-title":"Manual for the Derriford Appearance Scale 59 (DAS59)","author":"Harris D","year":"2004"},{"key":"e_1_2_8_21_1","unstructured":"Derriford Appearance Scale web site Retrieved February 28 2012 fromhttp:\/\/www.derriford.info."},{"key":"e_1_2_8_22_1","volume-title":"Society and the Adolescent Self\u2010Image","author":"Rosenberg M","year":"1989"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/0163278709356187"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1037\/0022-3514.89.4.623"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1207\/s15327752jpa6601_2"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1080\/00224490009552021"},{"key":"e_1_2_8_27_1","doi-asserted-by":"publisher","DOI":"10.1080\/13548506.2011.647701"},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.2217\/whe.10.23"},{"key":"e_1_2_8_29_1","doi-asserted-by":"publisher","DOI":"10.1080\/07399330500377531"},{"key":"e_1_2_8_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bodyim.2007.04.005"}],"container-title":["Psycho-Oncology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fpon.3350","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fpon.3350","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/pon.3350","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,16]],"date-time":"2023-10-16T12:57:53Z","timestamp":1697461073000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/pon.3350"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,7,19]]},"references-count":29,"journal-issue":{"issue":"12","published-print":{"date-parts":[[2013,12]]}},"alternative-id":["10.1002\/pon.3350"],"URL":"https:\/\/doi.org\/10.1002\/pon.3350","archive":["Portico"],"relation":{},"ISSN":["1057-9249","1099-1611"],"issn-type":[{"value":"1057-9249","type":"print"},{"value":"1099-1611","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,7,19]]}}}