{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,4,4]],"date-time":"2024-04-04T14:11:17Z","timestamp":1712239877715},"reference-count":55,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2015,9,1]],"date-time":"2015-09-01T00:00:00Z","timestamp":1441065600000},"content-version":"tdm","delay-in-days":1652,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Am. J. Med. Genet."],"published-print":{"date-parts":[[2011,4]]},"DOI":"10.1002\/ajmg.a.33863","type":"journal-article","created":{"date-parts":[[2011,2,23]],"date-time":"2011-02-23T17:38:13Z","timestamp":1298482693000},"page":"684-696","source":"Crossref","is-referenced-by-count":3,"title":["Comparison of the background, needs, and expectations for genetic counseling of adults with experience with Down syndrome, Marfan syndrome, and neurofibromatosis"],"prefix":"10.1002","volume":"155","author":[{"given":"Kathryn F.","family":"Peters","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephen A.","family":"Petrill","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2011,2,22]]},"reference":[{"key":"10.1002\/ajmg.a.33863-BIB1|cit2","doi-asserted-by":"crossref","first-page":"189","DOI":"10.1002\/1096-8628(20000918)94:3<189::AID-AJMG3>3.0.CO;2-E","article-title":"Goals, benefits, and outcomes of genetic counseling: Client and genetic counselor assessment","volume":"94","author":"Bernhardt","year":"2000","journal-title":"Am J Med Genet"},{"key":"10.1002\/ajmg.a.33863-BIB2|cit3","doi-asserted-by":"crossref","first-page":"323","DOI":"10.1034\/j.1399-0004.2001.600501.x","article-title":"Goals of genetic counseling","volume":"60","author":"Biesecker","year":"2001","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB3|cit4","doi-asserted-by":"crossref","first-page":"731","DOI":"10.1007\/s10897-007-9116-1","article-title":"What I wish I knew then\u2026reflections from personal experiences in counseling about Down syndrome","volume":"16","author":"Brasington","year":"2007","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB4|cit5","doi-asserted-by":"crossref","first-page":"266","DOI":"10.1038\/nrcardio.2010.31","article-title":"Marfan syndrome. Part 2: Treatment and management of patients","volume":"7","author":"Canadas","year":"2010","journal-title":"Nat Rev Cardiol"},{"key":"10.1002\/ajmg.a.33863-BIB5|cit6","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1007\/s10897-005-0519-6","article-title":"Evaluating genetic counseling: Client expectations, psychological adjustment and satisfaction with service","volume":"14","author":"Davey","year":"2005","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB6|cit7","doi-asserted-by":"crossref","first-page":"1099","DOI":"10.1016\/j.pcl.2008.07.001","article-title":"Primary care for children and adolescents with Down syndrome","volume":"55","author":"Davidson","year":"2008","journal-title":"Pediatr Clin North Am"},{"key":"10.1002\/ajmg.a.33863-BIB7|cit8","doi-asserted-by":"crossref","first-page":"724","DOI":"10.1038\/sj.ejhg.5201851","article-title":"Marfan syndrome: Clinical diagnosis and management","volume":"15","author":"Dean","year":"2007","journal-title":"Eur J Hum Genet"},{"key":"10.1002\/ajmg.a.33863-BIB8|cit9","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1002\/ajmg.c.30100","article-title":"Breaking difficult news in a newborn setting: Down syndrome as a paradigm","volume":"142C","author":"Dent","year":"2006","journal-title":"Am J Med Genet Part C"},{"key":"10.1002\/ajmg.a.33863-BIB9|cit10","doi-asserted-by":"crossref","first-page":"337","DOI":"10.1038\/352337a0","article-title":"Marfan syndrome caused by a recurrent de novo missense mutation in the fibrillin gene","volume":"352","author":"Dietz","year":"1991a","journal-title":"Nature"},{"key":"10.1002\/ajmg.a.33863-BIB10|cit11","doi-asserted-by":"crossref","first-page":"355","DOI":"10.1016\/0888-7543(91)90264-F","article-title":"The Marfan syndrome locus: Confirmation of Assignment to chromosome 15 and identification of tightly linked markers at 15q15-q21.3","volume":"9","author":"Dietz","year":"1991b","journal-title":"Genomics"},{"key":"10.1002\/ajmg.a.33863-BIB11|cit12","doi-asserted-by":"crossref","first-page":"73","DOI":"10.1097\/GIM.0b013e31815efde8","article-title":"First trimester diagnosis and screening for fetal aneuploidy","volume":"10","author":"Driscoll","year":"2008","journal-title":"Genet Med"},{"key":"10.1002\/ajmg.a.33863-BIB12|cit13","doi-asserted-by":"crossref","first-page":"82","DOI":"10.1136\/jnnp.2010.206532","article-title":"The neurofibromatoses","volume":"10","author":"Ferner","year":"2010","journal-title":"Pract Neurol"},{"key":"10.1002\/ajmg.a.33863-BIB13|cit14","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1007\/BF01408656","article-title":"Practice-based competencies for accrediation of and training in graduate programs in genetic counseling","volume":"5","author":"Fine","year":"1996","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB14|cit15","doi-asserted-by":"crossref","first-page":"102","DOI":"10.1186\/2047-783X-14-3-102","article-title":"Neurofibromatosis","volume":"14","author":"Gerber","year":"2009","journal-title":"Eur J Med Res"},{"key":"10.1002\/ajmg.a.33863-BIB15|cit16","doi-asserted-by":"crossref","first-page":"441","DOI":"10.1177\/1049732308314853","article-title":"Adolescents' transition to self-management of a chronic genetic disorder","volume":"18","author":"Giarelli","year":"2008a","journal-title":"Qual Health Res"},{"key":"10.1002\/ajmg.a.33863-BIB16|cit17","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1111\/j.1399-0004.2008.01052.x","article-title":"Attitudes antecedent to transition to self-management of a chronic genetic disorder","volume":"74","author":"Giarelli","year":"2008b","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB17|cit18","doi-asserted-by":"crossref","first-page":"663","DOI":"10.1111\/j.1745-7599.2009.00461.x","article-title":"Marfan syndrome","volume":"21","author":"Gonzales","year":"2009","journal-title":"J Am Acad Nurse Pract"},{"key":"10.1002\/ajmg.a.33863-BIB18|cit19","doi-asserted-by":"crossref","first-page":"348","DOI":"10.1016\/j.jpeds.2006.04.025","article-title":"Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1","volume":"149","author":"Graf","year":"2006","journal-title":"J Pediatr"},{"key":"10.1002\/ajmg.a.33863-BIB19|cit20","doi-asserted-by":"crossref","first-page":"124","DOI":"10.1111\/j.1399-0004.1998.tb03714.x","article-title":"Life expectancy in British Marfan syndrome populations","volume":"54","author":"Gray","year":"1998","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB20|cit21","doi-asserted-by":"crossref","first-page":"703","DOI":"10.1097\/MOP.0b013e328332c6ab","article-title":"Maternal age and chromosomally abnormal pregnancies: What we know and what we wish we knew","volume":"21","author":"Hassold","year":"2009","journal-title":"Curr Opin Pediatr"},{"key":"10.1002\/ajmg.a.33863-BIB21|cit22","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1016\/B978-0-12-405650-3.50008-X","volume-title":"Genetic counseling: Psychological dimensions","author":"Kessler","year":"1979"},{"key":"10.1002\/ajmg.a.33863-BIB22|cit23","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1023\/A:1025676205440","article-title":"Psychological aspects of genetic counseling: Teaching and counseling","volume":"6","author":"Kessler","year":"1997","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB23|cit24","doi-asserted-by":"crossref","first-page":"420","DOI":"10.1016\/j.jpeds.2008.08.045","article-title":"Health-related quality of life in children with neurofibromatosis type 1: Contribution of demographic factors, disease-related factors, and behavior","volume":"154","author":"Krab","year":"2009","journal-title":"J Pediatr"},{"key":"10.1002\/ajmg.a.33863-BIB24|cit25","doi-asserted-by":"crossref","first-page":"185","DOI":"10.1023\/A:1009447932274","article-title":"How do geneticists and genetic counselors counsel women from high-risk breast cancer families?","volume":"10","author":"Lobb","year":"2001","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB25|cit26","doi-asserted-by":"crossref","first-page":"841","DOI":"10.1016\/S0733-8619(01)00019-6","article-title":"Neurofibromatosis 1","volume":"20","author":"Lynch","year":"2002","journal-title":"Neurol Clin"},{"key":"10.1002\/ajmg.a.33863-BIB26|cit27","doi-asserted-by":"crossref","first-page":"434","DOI":"10.1007\/s10897-008-9173-0","article-title":"Assessment of the content and process of genetic counseling: A critical review of empirical studies","volume":"17","author":"Meiser","year":"2008","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB27|cit28","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1136\/jmg.34.3.237","article-title":"Genetic counselling: The psychological impact of meeting patients' expectations","volume":"34","author":"Michie","year":"1997","journal-title":"J Med Genet"},{"key":"10.1002\/ajmg.a.33863-BIB28|cit29","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1007\/s10038-006-0078-1","article-title":"Recent progress in genetics of Marfan syndrome and Marfan-associated disorders","volume":"52","author":"Mizuguchi","year":"2007","journal-title":"J Hum Genet"},{"key":"10.1002\/ajmg.a.33863-BIB29|cit30","doi-asserted-by":"crossref","first-page":"b3794","DOI":"10.1136\/bmj.b3794","article-title":"Trends in Down's syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: Analysis of data from the National Down Syndrome Cytogenetic Register","volume":"339","author":"Morris","year":"2009","journal-title":"BMJ"},{"key":"10.1002\/ajmg.a.33863-BIB30|cit31","unstructured":"National Down Syndrome Society Down Syndrome Fact Sheet"},{"key":"10.1002\/ajmg.a.33863-BIB31|cit32","first-page":"575","article-title":"Neurofibromatosis. Conference statement. National Institutes of Health Consensus Development Conference","volume":"45","author":"NIH Consensus Development Conference","year":"1988","journal-title":"Arch Neurol"},{"key":"10.1002\/ajmg.a.33863-BIB32|cit33","doi-asserted-by":"crossref","first-page":"694","DOI":"10.1002\/ajmg.a.31639","article-title":"FBN2, FBN1, TGFBR1, and TGFBR2 analyses in congenital contractural arachnodactyly","volume":"143A","author":"Nishimura","year":"2007","journal-title":"Am J Med Genet Part A"},{"key":"10.1002\/ajmg.a.33863-BIB33|cit34","doi-asserted-by":"crossref","first-page":"1893","DOI":"10.1002\/ajmg.a.31422","article-title":"Impact of neurofibromatosis 1 on quality of life: A cross-sectional study of 176 American cases","volume":"140A","author":"Page","year":"2006","journal-title":"Am J Med Genet Part A"},{"key":"10.1002\/ajmg.a.33863-BIB34|cit35","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1111\/j.1399-0004.2005.00446.x","article-title":"Living with Marfan syndrome: Coping with stigma","volume":"68","author":"Peters","year":"2005","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB35|cit36","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1034\/j.1399-0004.2001.600406.x","article-title":"Living with Marfan syndrome II. Medication adherence and physical activity modification","volume":"60","author":"Peters","year":"2001a","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB36|cit37","doi-asserted-by":"crossref","first-page":"110","DOI":"10.1034\/j.1399-0004.2002.620203.x","article-title":"Living with Marfan syndrome III. Quality of life and reproductive planning","volume":"62","author":"Peters","year":"2002","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB37|cit38","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1034\/j.1399-0004.2001.600405.x","article-title":"Living with Marfan syndrome I. Perceptions of the condition","volume":"60","author":"Peters","year":"2001b","journal-title":"Clin Genet"},{"key":"10.1002\/ajmg.a.33863-BIB38|cit39","article-title":"Development of a Scale to assess the background, needs and expectations of genetic counseling clients","author":"Peters","journal-title":"Am J Med Genet."},{"key":"10.1002\/ajmg.a.33863-BIB39|cit40","first-page":"501","volume-title":"Perceptions of health and illness: Current research and applications","year":"1997"},{"key":"10.1002\/ajmg.a.33863-BIB40|cit41","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1002\/ajmg.a.30839","article-title":"Initial cancer genetic counseling consultation: Change in counselees' cognitions and anxiety, and association with addressing their needs and preferences","volume":"137A","author":"Pieterse","year":"2005","journal-title":"Am J Med Genet Part A"},{"key":"10.1002\/ajmg.a.33863-BIB41|cit42","volume-title":"Principles and practice of medical genetics","author":"Pyeritz","year":"1996"},{"key":"10.1002\/ajmg.a.33863-BIB42|cit43","doi-asserted-by":"crossref","first-page":"387","DOI":"10.1007\/s10897-007-9101-8","article-title":"Neurofibromatosis type 1 in genetic counseling practice: Recommendations of the National Society of Genetic Counselors","volume":"16","author":"Radtke","year":"2007","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB43|cit44","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1002\/ajmg.a.30553","article-title":"Changing demographics of advanced maternal age (AMA) and the impact on the predicted incidence of Down syndrome in the United States: Implications for prenatal screening and genetic counseling","volume":"133A","author":"Resta","year":"2005","journal-title":"Am J Med Genet Part A"},{"key":"10.1002\/ajmg.a.33863-BIB44|cit45","doi-asserted-by":"crossref","first-page":"122","DOI":"10.1097\/00004703-199006000-00005","article-title":"Marfan syndrome in adolescents and young adults: Psychosocial functioning and knowledge","volume":"11","author":"Schneider","year":"1990","journal-title":"J Dev Behav Pediatr"},{"key":"10.1002\/ajmg.a.33863-BIB45|cit46","first-page":"136","volume-title":"Family communication about genetics: Theory and practice","author":"Skirton","year":"2010"},{"key":"10.1002\/ajmg.a.33863-BIB46|cit47","doi-asserted-by":"crossref","first-page":"339","DOI":"10.1891\/rtnp.17.4.339.53195","article-title":"Discovering and addressing the client's lay construct of genetic disease: An important aspect of genetic healthcare?","volume":"17","author":"Skirton","year":"2003","journal-title":"Res Theory Nurs Pract"},{"key":"10.1002\/ajmg.a.33863-BIB47|cit48","doi-asserted-by":"crossref","first-page":"e751","DOI":"10.1542\/peds.2009-0480","article-title":"Postnatal diagnosis of Down syndrome: Synthesis of the evidence on how best to deliver the news","volume":"124","author":"Skotko","year":"2009a","journal-title":"Pediatrics"},{"key":"10.1002\/ajmg.a.33863-BIB48|cit49","doi-asserted-by":"crossref","first-page":"2361","DOI":"10.1002\/ajmg.a.33082","article-title":"Prenatal diagnosis of Down syndrome: How best to deliver the news","volume":"149A","author":"Skotko","year":"2009b","journal-title":"Am J Med Genet Part A"},{"key":"10.1002\/ajmg.a.33863-BIB49|cit50","doi-asserted-by":"crossref","first-page":"112","DOI":"10.1007\/s10897-009-9269-1","article-title":"Prenatal testing for Down syndrome: Comparison of screening practices in the UK and USA","volume":"19","author":"Tapon","year":"2010","journal-title":"J Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB50|cit51","first-page":"195","article-title":"Reproductive decisions after prenatal diagnosis in neurofibromatosis type 1: Importance of genetic counseling","volume":"20","author":"Terzi","year":"2009","journal-title":"Genet Couns"},{"key":"10.1002\/ajmg.a.33863-BIB51|cit52","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1136\/jmg.35.5.405","article-title":"Psychosocial adaptation in adolescents and young adults with Marfan syndrome: An exploratory study","volume":"35","author":"Van Tongerloo","year":"1998","journal-title":"J Med Genet"},{"key":"10.1002\/ajmg.a.33863-BIB52|cit53","doi-asserted-by":"crossref","DOI":"10.1093\/oso\/9780195120660.001.0001","volume-title":"Psychosocial genetic counseling","author":"Weil","year":"2000"},{"key":"10.1002\/ajmg.a.33863-BIB53|cit54","volume-title":"Starting and Sustaining Genetic Support Groups","author":"Weiss","year":"1996"},{"key":"10.1002\/ajmg.a.33863-BIB54|cit55","doi-asserted-by":"crossref","first-page":"265","DOI":"10.1002\/gcc.20289","article-title":"Spectrum of single- and multiexon-NF1 copy number changes in a cohort of 1,100 unselected NF1 patients","volume":"45","author":"Wimmer","year":"2006","journal-title":"Genes Chromosomes Cancer"},{"key":"10.1002\/ajmg.a.33863-BIB55|cit56","doi-asserted-by":"crossref","first-page":"844","DOI":"10.1111\/j.1365-2133.2008.08949.x","article-title":"Impact of neurofibromatosis 1 upon quality of life in childhood: A cross-sectional study of 79 cases","volume":"160","author":"Wolkenstein","year":"2009","journal-title":"Br J Dermatol"}],"container-title":["American Journal of Medical Genetics Part A"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fajmg.a.33863","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/onlinelibrary.wiley.com\/wol1\/doi\/10.1002\/ajmg.a.33863\/fullpdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,4]],"date-time":"2024-04-04T13:10:49Z","timestamp":1712236249000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.a.33863"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2011,2,22]]},"references-count":55,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2011,4]]}},"URL":"https:\/\/doi.org\/10.1002\/ajmg.a.33863","relation":{},"ISSN":["1552-4825"],"issn-type":[{"value":"1552-4825","type":"print"}],"subject":[],"published":{"date-parts":[[2011,2,22]]}}}