Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease
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 a...
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-10-01
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| Series: | Journal of Clinical Medicine |
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| Online Access: | https://www.mdpi.com/2077-0383/10/20/4720 |
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| author | Caroline T. Seebauer Viola Freigang Franziska E. Schwan René Fischer Christopher Bohr Thomas S. Kühnel Kornelia E. C. Andorfer |
| author_facet | Caroline T. Seebauer Viola Freigang Franziska E. Schwan René Fischer Christopher Bohr Thomas S. Kühnel Kornelia E. C. Andorfer |
| author_sort | Caroline T. Seebauer |
| collection | DOAJ |
| description | 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 (<i>n</i> = 54) were surveyed. Eighty-five percent of patients (<i>n</i> = 46) used the calendar to gain information about HHT. Seventy-two percent (<i>n</i> = 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% (<i>n</i> = 26) to 81% (<i>n</i> = 44). Seventy-nine percent (<i>n</i> = 43) of patients confirmed that the Osler Calendar documented their therapeutic process either well or very well. Fifty-two percent (<i>n</i> = 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. |
| first_indexed | 2024-03-10T06:28:52Z |
| format | Article |
| id | doaj.art-6f60412c77a74a19b2c094faa89c55e0 |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-10T06:28:52Z |
| publishDate | 2021-10-01 |
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| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-6f60412c77a74a19b2c094faa89c55e02023-11-22T18:42:10ZengMDPI AGJournal of Clinical Medicine2077-03832021-10-011020472010.3390/jcm10204720Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of DiseaseCaroline T. Seebauer0Viola Freigang1Franziska E. Schwan2René Fischer3Christopher Bohr4Thomas S. Kühnel5Kornelia E. C. Andorfer6Department of Otorhinolaryngology, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyDepartment of Trauma, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyDepartment of Otorhinolaryngology, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyDepartment of Otorhinolaryngology, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyDepartment of Otorhinolaryngology, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyDepartment of Otorhinolaryngology, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyDepartment of Otorhinolaryngology, Regensburg University Medical Center, Franz-Josef-Strauß-Allee 11, 93053 Regensburg, GermanyHereditary 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 (<i>n</i> = 54) were surveyed. Eighty-five percent of patients (<i>n</i> = 46) used the calendar to gain information about HHT. Seventy-two percent (<i>n</i> = 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% (<i>n</i> = 26) to 81% (<i>n</i> = 44). Seventy-nine percent (<i>n</i> = 43) of patients confirmed that the Osler Calendar documented their therapeutic process either well or very well. Fifty-two percent (<i>n</i> = 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.https://www.mdpi.com/2077-0383/10/20/4720hereditary hemorrhagic telangiectasiaMorbus OslerRendu-Osler-Weber syndromeOsler Calendarorphan diseaseepistaxis |
| spellingShingle | Caroline T. Seebauer Viola Freigang Franziska E. Schwan René Fischer Christopher Bohr Thomas S. Kühnel Kornelia E. C. Andorfer Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease Journal of Clinical Medicine hereditary hemorrhagic telangiectasia Morbus Osler Rendu-Osler-Weber syndrome Osler Calendar orphan disease epistaxis |
| title | Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease |
| title_full | Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease |
| title_fullStr | Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease |
| title_full_unstemmed | Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease |
| title_short | Hereditary Hemorrhagic Telangiectasia: Success of the Osler Calendar for Documentation of Treatment and Course of Disease |
| title_sort | hereditary hemorrhagic telangiectasia success of the osler calendar for documentation of treatment and course of disease |
| topic | hereditary hemorrhagic telangiectasia Morbus Osler Rendu-Osler-Weber syndrome Osler Calendar orphan disease epistaxis |
| url | https://www.mdpi.com/2077-0383/10/20/4720 |
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