{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T04:47:24Z","timestamp":1789015644881,"version":"build-2803163510"},"reference-count":27,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2017,12,21]],"date-time":"2017-12-21T00:00:00Z","timestamp":1513814400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2017,12,21]],"date-time":"2017-12-21T00:00:00Z","timestamp":1513814400000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2018,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Follow\u2010up studies on predictive testing for hereditary neurodegenerative diseases mainly focussed on psychological outcomes. We investigated whether the social and personal life of mutation carriers differ negatively from non\u2010carriers and untested at\u2010risk individuals. Asymptomatic individuals (\u2265\u200935 years) who received a genetic test result for Huntington's disease, frontotemporal dementia or Alzheimer's disease more than 2 years before the onset of the study and untested subjects at 50% risk were invited to complete a questionnaire and an additional questionnaire with extra or adjusted items. Of the 283 selected individuals, 115 returned a positive informed consent (response rate 39.6%). Of these, 17 carriers, 30 non\u2010carriers and 27 untested persons (<jats:italic>n<\/jats:italic>\u2009=\u200974) fulfilled the criteria and completed both questionnaires. We found no significant differences in employment, financial situation and lifestyle or anxiety and depression between carriers and non\u2010carriers or untested individuals at risk. Carriers were more often single and childless, though these differences were not significant. The findings of this study suggest that the result of predictive testing on adult\u2010onset neurodegenerative diseases does not have a large negative effect on social and personal life, although these observations should be interpreted with caution because of the small number of participants and low response rate.<\/jats:p>","DOI":"10.1007\/s10897-017-0195-3","type":"journal-article","created":{"date-parts":[[2017,12,21]],"date-time":"2017-12-21T08:47:16Z","timestamp":1513846036000},"page":"947-954","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["The Effect of Predictive Testing in Adult\u2010Onset Neurodegenerative Diseases on Social and Personal Life"],"prefix":"10.1002","volume":"27","author":[{"given":"Petra E.","family":"Cohn\u2010Hokke","sequence":"first","affiliation":[{"name":"Department of Clinical Genetics VU University Medical Center Amsterdam 1081 HV The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John C.","family":"van Swieten","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics VU University Medical Center Amsterdam 1081 HV The Netherlands"},{"name":"Alzheimer Center, Department of Neurology VU University Medical Center Neuroscience Campus Amsterdam Amsterdam 1081 HV The Netherlands"},{"name":"Department of Neurology Erasmus Medical Center Rotterdam 3015 CE The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yolande A. 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