{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,20]],"date-time":"2026-02-20T06:00:51Z","timestamp":1771567251961,"version":"3.50.1"},"reference-count":28,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2013,4,13]],"date-time":"2013-04-13T00:00:00Z","timestamp":1365811200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Endocrinology"],"published-print":{"date-parts":[[2013,7]]},"abstract":"<jats:title>Summary<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Autoimmune polyendocrinopathy candidiasis ectodermal dystrophy (<jats:styled-content style=\"fixed-case\">APECED<\/jats:styled-content>) is a rare disorder responsible for chronic candidiasis, a wide variety of autoimmune disorders and a risk of squamous cell carcinoma of the oral cavity or oesophagus. We investigated the impairment of quality of life in our cohort of Finnish patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Subjects, design and measurement<\/jats:title><jats:p>In a postal survey, 26 patients with <jats:styled-content style=\"fixed-case\">APECED<\/jats:styled-content> responded to three self\u2010reported health\u2010related quality\u2010of\u2010life questionnaires: <jats:styled-content style=\"fixed-case\">RAND<\/jats:styled-content>\u201036 (general health), <jats:styled-content style=\"fixed-case\">RBDI<\/jats:styled-content> (depression) and <jats:styled-content style=\"fixed-case\">DLQI<\/jats:styled-content> (dermatology life quality index).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>General health and vitality were the most affected items in our cohort. Male subjects presented higher impairment in emotional role limitations, social functioning, bodily pain, general mental health\/emotional well\u2010being, energy\/vitality and general health perceptions but without reaching statistical significance. The number of accumulated diseases in <jats:styled-content style=\"fixed-case\">APECED<\/jats:styled-content> was not associated with lower results. But, age and duration of <jats:styled-content style=\"fixed-case\">APECED<\/jats:styled-content> correlated with fatigue (<jats:italic>P\u00a0<\/jats:italic>=<jats:italic>\u00a0<\/jats:italic>0\u00b701), well\u2010being (<jats:italic>P\u00a0<\/jats:italic>=<jats:italic>\u00a0<\/jats:italic>0\u00b702) and general health (<jats:italic>P\u00a0<\/jats:italic>=<jats:italic>\u00a0<\/jats:italic>0\u00b703) impairment. Depressive symptoms affected 29% of the patients. There was a statistical negative correlation between <jats:styled-content style=\"fixed-case\">RBDI<\/jats:styled-content> score and age and duration of <jats:styled-content style=\"fixed-case\">APECED<\/jats:styled-content>. Hair loss, alopecia areata universalis especially, affected more severely the quality of life of female patients. Vitiligo and candidiasis did not have any significant impact on both the genders.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>We report the first study on specific impairment of quality of life related to <jats:styled-content style=\"fixed-case\">APECED<\/jats:styled-content> in a cohort of adult Finnish patients. General health, emotional well\u2010being and vitality were the most diminished aspects of quality of life in our cohort. However, our results will need to be confirmed by additional controlled studies.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cen.12087","type":"journal-article","created":{"date-parts":[[2012,10,31]],"date-time":"2012-10-31T23:11:12Z","timestamp":1351725072000},"page":"134-141","source":"Crossref","is-referenced-by-count":18,"title":["What is the burden of living with autoimmune polyendocrinopathy candidiasis ectodermal dystrophy (<scp>APECED<\/scp>) in 2012? 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