دورية أكاديمية
Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH). ...
| العنوان: | Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH). ... |
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| المؤلفون: | Bänziger, Silas, Weisshaar, Kimmo, Arokoski, Reetta, Gerull, Sabine, Halter, Jörg, Rovó, Alicia, Bargetzi, Mario, Goede, Jeroen S, Senft, Yuliya, Valenta, Sabine, Passweg, Jakob R, Drexler, Beatrice |
| بيانات النشر: | Springer-Verlag |
| سنة النشر: | 2023 |
| المجموعة: | DataCite Metadata Store (German National Library of Science and Technology) |
| مصطلحات موضوعية: | 610 Medicine & health |
| الوصف: | INTRODUCTION Electronic patient-reported outcomes (ePRO) are increasingly recognized in health care, as they have been demonstrated to improve patient outcomes in cancer, but have been less studied in rare hematological diseases. The aim of this study was to develop and test the feasibility of an ePRO system specifically customized for aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH). METHODS After performing a user-centered design evaluation an ePRO system for AA and PNH patients could be customized and the application was tested by patients and their medical teams for 6 months. Symptom-reporting triggered self-management advice for patients and prompts them to contact clinicians in case of severe symptoms, while the medical team received alerts of severe symptoms for patient care. RESULTS All nine included patients showed a high adherence rate to the weekly symptom-reporting (72%) and reported high satisfaction. The system was rated high for usage, comprehensibility, and integration into ... |
| نوع الوثيقة: | text article in journal/newspaper |
| اللغة: | unknown |
| العلاقة: | https://dx.doi.org/10.1007/s00277-022-05012-5Test |
| DOI: | 10.48350/174489 |
| الإتاحة: | https://doi.org/10.48350/17448910.1007/s00277-022-05012-5Test https://boris.unibe.ch/174489Test/ |
| حقوق: | open access ; Creative Commons Attribution 4.0 International ; https://creativecommons.org/licenses/by/4.0/legalcodeTest ; cc-by-4.0 ; http://purl.org/coar/access_right/c_abf2Test |
| رقم الانضمام: | edsbas.E1AA8919 |
| قاعدة البيانات: | BASE |
| DOI: | 10.48350/174489 |
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