{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,20]],"date-time":"2026-07-20T14:17:38Z","timestamp":1784557058864,"version":"3.55.0"},"reference-count":22,"publisher":"Bioscientifica","issue":"10","license":[{"start":{"date-parts":[[2023,8,14]],"date-time":"2023-08-14T00:00:00Z","timestamp":1691971200000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["ec.bioscientifica.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2023,8,14]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Klinefelter syndrome (KS) is associated with an increased risk of lower socioeconomic status and a higher risk for morbidity and mortality, which may have a significant impact on quality of life (QOL). The objective of this study is to investigate QOL in a large European cohort of men with KS.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Cross-sectional multicentre study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Two-hundred-eighteen men with KS were recruited from 14 clinical study centres in 6 European countries which participated in the European dsd-LIFE study. Male normative data from a healthy and a psychiatric reference population were used for comparison. The validated World Health Organization (WHO) QOL (WHOQOL)-BREF questionnaire was used to investigate five main domains of quality of life (WHOQOL): global, physical, psychological, environment, and social.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The QOL physical domain score was lower for men with KS compared to the healthy reference population (KS: 66.9;\n                      <jats:sc>s.d.<\/jats:sc>\n                      19.4,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009193; healthy reference population: 76.5;\n                      <jats:sc>s.d.<\/jats:sc>\n                      16.2,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20091324,\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001) but higher compared to the psychiatric reference population (54.6;\n                      <jats:sc>s.d.<\/jats:sc>\n                      20.6;\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200977,\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001). The WHOQOL-psychological domain score was lower for men with KS compared to the healthy reference population (KS: 63.6;\n                      <jats:sc>s.d.<\/jats:sc>\n                      17.8,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009193; healthy reference population: 67.8;\n                      <jats:sc>s.d.<\/jats:sc>\n                      15.6,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20091324,\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.05) but higher compared to the psychiatric reference population (45.9;\n                      <jats:sc>s.d.<\/jats:sc>\n                      26.0),\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200977,\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001). The social domain score on the WHOQOL questionnaire was found to be lower in men with Klinefelter syndrome (KS) compared to the healthy reference population (KS: 60.0;\n                      <jats:sc>s.d.<\/jats:sc>\n                      21.6,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009193; healthy reference population: 68.2;\n                      <jats:sc>s.d.<\/jats:sc>\n                      13.8,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20091324,\n                      <jats:italic>P<\/jats:italic>\n                      &lt; 0.001). However, this score was similar to that of the psychiatric reference population (61.0;\n                      <jats:sc>s.d.<\/jats:sc>\n                      17.0,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200977,\n                      <jats:italic>P<\/jats:italic>\n                      \u2009=\u20090.5). The WHO environment domain score of men with KS (70.0;\n                      <jats:sc>s.d.<\/jats:sc>\n                      15.0,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009193) was similar to the healthy reference population (70.5;\n                      <jats:sc>s.d.<\/jats:sc>\n                      20.7,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20091324) but higher compared to the psychiatric reference population (61.9;\n                      <jats:sc>s.d.<\/jats:sc>\n                      20.8,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200977,\n                      <jats:italic>P<\/jats:italic>\n                      \u2009=\u20090.002). Experienced discrimination, less social activities, and the presence of chronic health problems were associated with significantly decreased QOL in men with KS.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Overall QOL in European men with KS is significantly worse compared to a healthy European reference population. Especially, the presence of discrimination, less social activities, and chronic health problems is associated with lower physical, psychological, and social QOL. Further studies are necessary to investigate if a multidisciplinary approach may help to provide adequate counselling and psychosocial support to improve QOL.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1530\/ec-23-0111","type":"journal-article","created":{"date-parts":[[2023,8,14]],"date-time":"2023-08-14T11:31:45Z","timestamp":1692012705000},"update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-10","source":"Crossref","is-referenced-by-count":10,"title":["Quality of life in men with Klinefelter syndrome: a multicentre study"],"prefix":"10.1530","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3434-1765","authenticated-orcid":true,"given":"Sebastian","family":"Franik","sequence":"first","affiliation":[{"name":"Department of Obstetrics and Gynaecology, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathrin","family":"Fleischer","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynaecology, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"Kortmann","sequence":"additional","affiliation":[{"name":"Department of Pediatric Urology, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nike M","family":"Stikkelbroeck","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen","family":"D\u2019Hauwers","sequence":"additional","affiliation":[{"name":"Department of Urology, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Bouvattier","sequence":"additional","affiliation":[{"name":"Department of Pediatric Endocrinology, Bic\u00eatre Hospital, Paris Sud University, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jolanta","family":"Slowikowska-Hilczer","sequence":"additional","affiliation":[{"name":"Department of Andrology and Reproductive Endocrinology, Medical University of Lodz, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Solange","family":"Grunenwald","sequence":"additional","affiliation":[{"name":"Department of Endocrinology and Metabolic Disease, Centre Hospitalier Universitaire de Toulouse, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tim","family":"van de Grift","sequence":"additional","affiliation":[{"name":"Departments of Plastic Surgery and Medical Psychology, Amsterdam UMC location VUmc, Amsterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Audrey","family":"Cartault","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Hospital Des Enfants, Toulouse, France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annette","family":"Richter-Unruh","sequence":"additional","affiliation":[{"name":"Kinderendokrinologie und Diabetologie, Universit\u00e4tsklinikum Ruhr-Universit\u00e4t Bochum, Kinderklinik, Bochum, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7469-6069","authenticated-orcid":true,"given":"Nicole","family":"Reisch","sequence":"additional","affiliation":[{"name":"Department of Endocrinology, Medizinische Klinik and Poliklinik IV, University Hospital Munich, Munich, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ute","family":"Thyen","sequence":"additional","affiliation":[{"name":"Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee, Lubeck, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6127-0747","authenticated-orcid":true,"given":"Joanna","family":"IntHout","sequence":"additional","affiliation":[{"name":"Department for Health Evidence, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0181-0403","authenticated-orcid":true,"given":"Hedi L","family":"Claahsen-van der Grinten","sequence":"additional","affiliation":[{"name":"Department of Pediatric Endocrinology, Amalia Childrens Hospital, Radboudumc, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"_","family":"_","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"416","reference":[{"key":"bib1","series-title":"Journal of Clinical Endocrinology and Metabolism","first-page":"622","article-title":"Prenatal and postnatal prevalence of Klinefelter syndrome: a national registry study","volume":"88","author":"Bojesen","year":"2003","unstructured":"Bojesen AJuul S & Gravholt CH. 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