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This study aimed to assess uptake and decision making for predictive genetic testing and the impact on psychological well\u2010being. Individuals who had participated in the gene discovery study with a 50 % a priori risk of inheriting VCP disease were sent a letter of invitation offering genetic counseling and testing and were also invited to participate in this psychosocial study. A total of 102 individuals received an invitation and 33 individuals participated in genetic counseling and testing (32.3 %) with 29 completing baseline questionnaires. Twenty completed the follow\u2010up post\u2010test Hospital Anxiety and Depression Scale questionnaire including 13 of the 18 who had tested positive. Mean risk perception at baseline was 50.1 %. Reasons for testing included planning for the future, relieving uncertainty, informing children and satisfying curiosity. At baseline, one quarter of the participants had high levels of anxiety. However, scores were normal one year following testing. In this small cohort, one third of individuals at 50 % risk chose pre\u2010symptomatic testing. Although one quarter of those choosing testing had high anxiety at baseline, this was not evident at follow\u2010up.<\/jats:p>","DOI":"10.1007\/s10897-015-9819-7","type":"journal-article","created":{"date-parts":[[2015,2,25]],"date-time":"2015-02-25T22:43:52Z","timestamp":1424904232000},"page":"842-850","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Psychological Impact of Predictive Genetic Testing in VCP Inclusion Body Myopathy, Paget Disease of Bone and Frontotemporal Dementia"],"prefix":"10.1002","volume":"24","author":[{"given":"Abhilasha","family":"Surampalli","sequence":"first","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Manaswitha","family":"Khare","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Georgette","family":"Kubrussi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie","family":"Wencel","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jasmin","family":"Tanaja","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sandra","family":"Donkervoort","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathryn","family":"Osann","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Oncology, Department of Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mariella","family":"Simon","sequence":"additional","affiliation":[{"name":"Developmental and Cell Biology University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Douglas","family":"Wallace","sequence":"additional","affiliation":[{"name":"Developmental and Cell Biology University of California Irvine CA 92697 USA"},{"name":"Center for Mitochondrial and Epigenomic Medicine; Department of Pathology and Laboratory Medicine Children's Hospital of Philadelphia Pphiladelphia PA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles","family":"Smith","sequence":"additional","affiliation":[{"name":"Department of Neurology and Sanders\u2010Brown Center on Aging University of Kentucky Lexington KY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aideen","family":"M.McInerney\u2010Leo","sequence":"additional","affiliation":[{"name":"The University of Queensland Diamantina Institute, Translational Research Institute Princess Alexandra Hospital Woolloongabba Brisbane Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Virginia","family":"Kimonis","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Genetics and Genomic Medicine University of California Irvine CA 92697 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2015,2,26]]},"reference":[{"key":"e_1_2_9_2_1","unstructured":"Online Mendelian Inheritance in Man OMIM\u00ae. 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