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In Australia, strategies for <jats:styled-content style=\"fixed-case\">NF1<\/jats:styled-content> health surveillance are less well developed for adults than they are for children, resulting in inequalities between pediatric and adult care. The aims of this study were to determine the uptake of health monitoring and capacity of adults with <jats:styled-content style=\"fixed-case\">NF1<\/jats:styled-content> to self\u2010manage their health. Australian adults with <jats:styled-content style=\"fixed-case\">NF1<\/jats:styled-content> (<jats:italic>n<\/jats:italic> = 94, 18\u201340 years) participated in a semi\u2010structured interview. Almost half reported no regular health monitoring. Thematic analysis of interviews identified four main themes as to why: (i) did not know where to seek care, (ii) unaware of the need for regular monitoring, (iii) futility of health monitoring as nothing can be done for <jats:styled-content style=\"fixed-case\">NF1<\/jats:styled-content>, and (iv) feeling healthy, therefore monitoring unnecessary. Overall, there were low levels of patient activation, indicating that adults with <jats:styled-content style=\"fixed-case\">NF1<\/jats:styled-content> lacked knowledge and confidence to manage their health and health care. Findings are discussed in the context of service provision for adults with <jats:styled-content style=\"fixed-case\">NF1<\/jats:styled-content> in New South Wales, Australia.<\/jats:p>","DOI":"10.1111\/cge.12627","type":"journal-article","created":{"date-parts":[[2015,6,17]],"date-time":"2015-06-17T06:10:56Z","timestamp":1434521456000},"page":"385-391","source":"Crossref","is-referenced-by-count":15,"title":["Uptake of health monitoring and disease self\u2010management in Australian adults with neurofibromatosis type 1: strategies to improve care"],"prefix":"10.1111","volume":"89","author":[{"given":"H.A.","family":"Crawford","sequence":"first","affiliation":[{"name":"Discipline of Paediatrics and Child Health The University of Sydney  Sydney New South Wales Australia"},{"name":"The Institute for Neuroscience and Muscle Research  Westmead New South Wales 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