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Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease
Seebauer, Caroline T., Freigang, Viola
, Schwan, Franziska E.
, Fischer, René, Bohr, Christopher, Kühnel, Thomas S.
und Andorfer, Kornelia E. C.
(2021)
Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease.
Journal of Clinical Medicine 10 (20), S. 1-11.
Veröffentlichungsdatum dieses Volltextes: 20 Jan 2022 13:49
Artikel
DOI zum Zitieren dieses Dokuments: 10.5283/epub.51462
Zusammenfassung
Hereditary hemorrhagic telangiectasia (HHT; Rendu-Osler-Weber syndrome) affects the capillary and larger vessels, leading to arteriovenous shunts. Epistaxis is the main symptom impairing quality of life. The aim of the Osler Calendar is to offer information about the extent of the systemic disease and the current state of treatment. A care plan with information on the rare disease and ...
Hereditary hemorrhagic telangiectasia (HHT; Rendu-Osler-Weber syndrome) affects the capillary and larger vessels, leading to arteriovenous shunts. Epistaxis is the main symptom impairing quality of life. The aim of the Osler Calendar is to offer information about the extent of the systemic disease and the current state of treatment. A care plan with information on the rare disease and self-treatment of epistaxis was created. Organ examinations and ongoing treatments were recorded. A questionnaire documents the treatment success, including patient satisfaction, frequency of hemorrhage and hemoglobin levels. The patients using the Osler Calendar for at least one year (n = 54) were surveyed. Eighty-five percent of patients (n = 46) used the calendar to gain information about HHT. Seventy-two percent (n = 39) used the Osler Calendar for instructions on the self-treatment of nosebleeds. The calendar increased patients' understanding for the need for organ screenings from 48% (n = 26) to 81% (n = 44). Seventy-nine percent (n = 43) of patients confirmed that the Osler Calendar documented their therapeutic process either well or very well. Fifty-two percent (n = 28) saw an improvement in the therapeutic process due to the documentation. The Osler Calendar records the individual intensity of the disease and facilitates the communication between attending physicians. It is a tool for specialists to review treatment strategies. Furthermore, the calendar enhances patients' comprehension of their condition.
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Details
| Dokumentenart | Artikel | ||||
| Titel eines Journals oder einer Zeitschrift | Journal of Clinical Medicine | ||||
| Verlag: | MDPI | ||||
|---|---|---|---|---|---|
| Ort der Veröffentlichung: | BASEL | ||||
| Band: | 10 | ||||
| Nummer des Zeitschriftenheftes oder des Kapitels: | 20 | ||||
| Seitenbereich: | S. 1-11 | ||||
| Datum | 14 Oktober 2021 | ||||
| Institutionen | Medizin > Lehrstuhl für Unfallchirurgie Medizin > Lehrstuhl für Hals-Nasen-Ohren-Heilkunde | ||||
| Identifikationsnummer |
| ||||
| Stichwörter / Keywords | EPISTAXIS; BEVACIZUMAB; MANAGEMENT; hereditary hemorrhagic telangiectasia; Morbus Osler; Rendu-Osler-Weber syndrome; Osler Calendar; orphan disease; epistaxis; arteriovenous malformations; organ manifestation; screening; laser therapy | ||||
| Dewey-Dezimal-Klassifikation | 600 Technik, Medizin, angewandte Wissenschaften > 610 Medizin | ||||
| Status | Veröffentlicht | ||||
| Begutachtet | Ja, diese Version wurde begutachtet | ||||
| An der Universität Regensburg entstanden | Ja | ||||
| URN der UB Regensburg | urn:nbn:de:bvb:355-epub-514626 | ||||
| Dokumenten-ID | 51462 |
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