{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T03:13:28Z","timestamp":1787022808456,"version":"build-2736575974"},"reference-count":37,"publisher":"Oxford University Press (OUP)","issue":"5","content-domain":{"domain":["eje.bioscientifica.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2013,5]]},"abstract":"<jats:sec>\n                    <jats:title>Context<\/jats:title>\n                    <jats:p>\n                      Germline mutations in succinate dehydrogenase (\n                      <jats:italic>SDH<\/jats:italic>\n                      ) genes predispose carriers for developing paragangliomas, and studies on their quality of life (QoL) are scarce.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>\n                      The objectives of this study were to assess QoL in patients with paragangliomas (PGL), to evaluate long-term QoL, and to explore potential differences in QoL between\n                      <jats:italic>SDH<\/jats:italic>\n                      mutation carriers and paraganglioma patients without an\n                      <jats:italic>SDH<\/jats:italic>\n                      mutation.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Cross-sectional, case\u2013control study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Tertiary referral center.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Subjects<\/jats:title>\n                    <jats:p>\n                      One hundred and seventy four paraganglioma patients were included: 25\n                      <jats:italic>SDHB<\/jats:italic>\n                      , two\n                      <jats:italic>SDHC<\/jats:italic>\n                      , and 122\n                      <jats:italic>SDHD<\/jats:italic>\n                      mutation carriers and 25 patients without an\n                      <jats:italic>SDH<\/jats:italic>\n                      mutation. They provided 100 peers as control persons. Furthermore, patients were compared with age-adjusted reference populations.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main outcome measures<\/jats:title>\n                    <jats:p>QoL was assessed using three validated health-related QoL questionnaires: the Hospital Anxiety and Depression Scale, the Multidimensional Fatigue Index 20, and the Short Form 36.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Patients reported a significantly impaired QoL compared with their own controls, mainly on fatigue and physical condition subscales. Compared with age-adjusted literature values, patients had significantly impaired scores on physical, psychological, and social subscales. A decreased QoL was mainly related to paraganglioma-associated complaints.<\/jats:p>\n                    <jats:p>\n                      There was no difference in QoL between the various\n                      <jats:italic>SDH<\/jats:italic>\n                      mutation carriers or paraganglioma patients without an\n                      <jats:italic>SDH<\/jats:italic>\n                      mutation. QoL in asymptomatic mutation carriers, i.e. without manifest disease, did not differ from QoL of the general population. Long-term results in 41 patients showed no alteration in QoL besides a reduced level of activity.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>QoL is decreased in paraganglioma patients but stable when measured over time.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1530\/eje-12-0968","type":"journal-article","created":{"date-parts":[[2013,2,8]],"date-time":"2013-02-08T04:02:41Z","timestamp":1360296161000},"page":"689-697","update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-1","source":"Crossref","is-referenced-by-count":26,"title":["Quality of life is decreased in patients with paragangliomas"],"prefix":"10.1093","volume":"168","author":[{"given":"L T","family":"van Hulsteijn","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A","family":"Louisse","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"B","family":"Havekes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A A","family":"Kaptein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J C","family":"Jansen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"F J","family":"Hes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J W A","family":"Smit","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E P M","family":"Corssmit","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","reference":[{"issue":"11","key":"1_29807799","doi-asserted-by":"publisher","first-page":"4069","DOI":"10.1210\/jc.2007-1720","volume":"92","author":"Pacak","year":"2007","journal-title":"Journal of Clinical Endocrinology &amp; 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