{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T02:55:05Z","timestamp":1791428105663,"version":"4.3.3"},"reference-count":31,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2011,3,7]],"date-time":"2011-03-07T00:00:00Z","timestamp":1299456000000},"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":[[2011,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p><jats:italic>Objective<\/jats:italic>: Li Fraumeni syndrome (LFS) and Von Hippel\u2010Lindau disease (VHL) are two rare hereditary tumor syndromes, characterized by a high risk of developing multiple tumors at various sites and ages for which preventive and treatment options are limited. For partners, it may be difficult to deal with the on\u2010going threat of tumors in both their spouse and children. Therefore, this study aims to evaluate the prevalence of and factors associated with psychological distress among partners of individuals with or at high risk of LFS or VHL.<\/jats:p><jats:p><jats:italic>Methods<\/jats:italic>: As part of a nationwide, cross\u2010sectional study, partners of individuals diagnosed with or at high risk of LFS or VHL were invited to complete a self\u2010report questionnaire assessing distress, worries, and health\u2010related quality of life.<\/jats:p><jats:p><jats:italic>Results<\/jats:italic>: Fifty\u2010five (58%) of those high\u2010risk individuals with a partner consented to having their partner approached for the study. In total, 50 partners (91%) completed the questionnaire, of whom 28% reported clinically relevant levels of syndrome\u2010related distress. Levels of distress and worries of the partners and their high\u2010risk spouse were significantly correlated. Younger age and a lack of social support were also associated significantly with heightened levels of distress and worries. The majority of partners (76%) believed that professional psychosocial support should be routinely offered to them.<\/jats:p><jats:p><jats:italic>Conclusions<\/jats:italic>: Approximately one\u2010quarter of the partners exhibit clinically relevant levels of distress that warrant psychological support. The distress levels of the \u2018patient\u2019 could potentially be used to identify partners at risk of developing clinically relevant levels of distress. Copyright \u00a9 2011 John Wiley &amp; Sons, Ltd.<\/jats:p>","DOI":"10.1002\/pon.1951","type":"journal-article","created":{"date-parts":[[2011,3,8]],"date-time":"2011-03-08T12:05:26Z","timestamp":1299585926000},"page":"631-638","source":"Crossref","is-referenced-by-count":35,"title":["Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes"],"prefix":"10.1002","volume":"20","author":[{"given":"C. R. M.","family":"Lammens","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E. M. A.","family":"Bleiker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Verhoef","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. G. E. 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