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 (2023). Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH). Annals of hematology, 102(1), pp. 199-208. Springer-Verlag 10.1007/s00277-022-05012-5
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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 daily life. Most patients (78%) would continue and all would recommend the application to other AA/PNH patients. Technical performance was rarely a barrier and healthcare providers saw ePRO-AA-PNH as a useful supplement, but the lacking integration into the hospital information system was identified as a major barrier to usage.
CONCLUSION
An ePRO system customized for AA and PNH was feasible in terms of adherence, satisfaction, and performance, showing a high potential for these rare conditions in terms of data collection and patient guidance. However, the integration into clinical workflows is crucial for further routine use.
TRIAL REGISTRATION
ClinicalTrials.gov NCT04128943.
Item Type: |
Journal Article (Original Article) |
|---|---|
Division/Institute: |
04 Faculty of Medicine > Department of Haematology, Oncology, Infectious Diseases, Laboratory Medicine and Hospital Pharmacy (DOLS) > Clinic of Haematology and Central Haematological Laboratory |
UniBE Contributor: |
Rovó, Alicia |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
0939-5555 |
Publisher: |
Springer-Verlag |
Language: |
English |
Submitter: |
Pubmed Import |
Date Deposited: |
04 Nov 2022 13:49 |
Last Modified: |
04 Jan 2023 00:14 |
Publisher DOI: |
10.1007/s00277-022-05012-5 |
PubMed ID: |
36326854 |
Uncontrolled Keywords: |
Aplastic anemia Electronic health record Paroxysmal nocturnal hemoglobinuria Patient-reported outcomes Self-management ePRO |
BORIS DOI: |
10.48350/174489 |
URI: |
https://boris.unibe.ch/id/eprint/174489 |
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