{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T00:00:51Z","timestamp":1791417651607,"version":"4.3.3"},"reference-count":23,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2024,3,25]],"date-time":"2024-03-25T00:00:00Z","timestamp":1711324800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acad Dermatol Venereol"],"published-print":{"date-parts":[[2024,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Patients with inherited ichthyosis suffer from scaling due to mutations affecting the epidermal barrier. Symptomatic treatment with ointments, bathing and mechanical scale removal can alleviate the disease, but therapy is time and cost intensive.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>We investigated costs, time and disease burden of ichthyoses. The study addresses difficulties of the healthcare situation for patients with ichthyoses and reveals potential improvements.<\/jats:p><\/jats:sec><jats:sec><jats:title>Materials and Methods<\/jats:title><jats:p>We developed a questionnaire addressing time and financial effort for the treatment. Additionally, we collected data of the Dermatology Life Quality Index (DLQI) and the Pruritus Life Quality (5PLQ) questionnaires to determine the impact of ichthyosis and associated pruritus on quality of life (QoL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We recruited 144 patients with ichthyosis (median age: 23; 53.5% female) from the Department of Dermatology in Muenster (Germany) and the German patient support group including common, rare and syndromic subtypes. Eighty\u2010seven percent reported applying topical therapeutics at least once per day, 66.4% several times with an overall median duration of 15\u2009min. Highest single expenditure of time was due to balneotherapy (<jats:italic>n<\/jats:italic>\u2009=\u2009115; median bathing time: 40\u2009min). In 81.9%, the health insurance did not completely cover the costs for topical treatment causing additional financial burden to the patient with a median of 71 \u20ac per quarter, herein creams being the largest cost factor (50 \u20ac). Patients with Netherton syndrome showed the highest median expenditure (170 \u20ac). The QoL impairment under treatment was moderate (median DLQI: 8.5 points). Pruritus was prevalent in 79.9% and showed a distinct impact on QoL (median 5PLQ: 7.5 points) without any significant difference between the subtypes (<jats:italic>p<\/jats:italic>\u2009=\u20090.37).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Patients suffering from ichthyoses have a large and lifelong overall burden in mild and severe subtypes. Since continuous topical treatment is required, financial and psychosocial support needs to be considered beyond dermatological care.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jdv.19804","type":"journal-article","created":{"date-parts":[[2024,3,25]],"date-time":"2024-03-25T07:05:10Z","timestamp":1711350310000},"page":"1809-1817","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Personal, financial and time burden in inherited ichthyoses: A\u00a0survey of 144 patients in a university\u2010based setting"],"prefix":"10.1111","volume":"38","author":[{"given":"C.","family":"Klein","sequence":"first","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"V.","family":"Oji","sequence":"additional","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"},{"name":"Hautarztpraxis am Buddenturm  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3080-497X","authenticated-orcid":false,"given":"R.","family":"Sommer","sequence":"additional","affiliation":[{"name":"German Centre for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing University Medical Centre Hamburg\u2010Eppendorf  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4026-8728","authenticated-orcid":false,"given":"M.","family":"Augustin","sequence":"additional","affiliation":[{"name":"German Centre for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing University Medical Centre Hamburg\u2010Eppendorf  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3612-7786","authenticated-orcid":false,"given":"S.","family":"St\u00e4nder","sequence":"additional","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"},{"name":"Center of Chronic Pruritus University Hospital of M\u00fcnster  M\u00fcnster Germany"},{"name":"Section Pruritus Medicine, Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Salzmann","sequence":"additional","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Kiekbusch","sequence":"additional","affiliation":[{"name":"Support Group \u201cSelbsthilfe Ichthyose e. V.\u201d  Mittenwalde Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Bodes","sequence":"additional","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M. F.","family":"Danzer","sequence":"additional","affiliation":[{"name":"Institute of Biostatistics and Clinical Research University of M\u00fcnster  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Traupe","sequence":"additional","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Fischer","sequence":"additional","affiliation":[{"name":"Medical Center, Faculty of Medicine, Institute of Human Genetics University of Freiburg  Freiburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Steinke","sequence":"additional","affiliation":[{"name":"Department of Dermatology University Hospital of M\u00fcnster  M\u00fcnster Germany"},{"name":"Hautarztpraxis am Hohenzollernring  M\u00fcnster Germany"},{"name":"Medical School OWL University of Bielefeld  Bielefeld Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7284-9949","authenticated-orcid":false,"given":"K.","family":"S\u00fc\u00dfmuth","sequence":"additional","affiliation":[{"name":"Department of Dermatology and Allergology Helios Klinikum Berlin\u2010Buch, Campus of Medical School Berlin  Berlin Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,3,25]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40257-017-0313-x"},{"issue":"10","key":"e_1_2_10_3_1","doi-asserted-by":"crossref","first-page":"1053","DOI":"10.1111\/ddg.13340","article-title":"S1 guidelines for the diagnosis and treatment of ichthyoses\u2014update","volume":"15","author":"Oji V","year":"2017","journal-title":"J Dtsch Dermatol Ges"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2009.11.020"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00441-013-1558-1"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/jdv.17873"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-8-28"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.2011.10701.x"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0038-1676854"},{"issue":"3","key":"e_1_2_10_10_1","first-page":"E374","article-title":"A review of quality of life of patients suffering from ichthyosis","volume":"61","author":"Troiano G","year":"2020","journal-title":"J Prev Med Hyg"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-021-02085-9"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.2340\/00015555-1955"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1525-1470.2011.01432.x"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jdermsci.2018.08.008"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/jdv.15613"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaci.2016.07.019"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2230.1994.tb01167.x"},{"key":"e_1_2_10_18_1","first-page":"64","article-title":"Kurzfragebogen zur Lebensqualit\u00e4t bei chronischem Pruritus: ein neues Instrument zur Nutzung in der Praxis. 50. 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