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. 2023 Jan;102(1):199-208.
doi: 10.1007/s00277-022-05012-5. Epub 2022 Nov 3.

Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH)

Silas Bänziger  1 , Kimmo Weisshaar  1 , Reetta Arokoski  2 , Sabine Gerull  1 , Jörg Halter  1 , Alicia Rovó  3 , Mario Bargetzi  4 , Jeroen S Goede  5 , Yuliya Senft  1 , Sabine Valenta  1   6 , Jakob R Passweg  1 , Beatrice Drexler  7
Affiliations

Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH)

Silas Bänziger et al. Ann Hematol. 2023 Jan.

Abstract

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.

Keywords: Aplastic anemia; Electronic health record; Paroxysmal nocturnal hemoglobinuria; Patient-reported outcomes; Self-management; ePRO.

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Conflict of interest statement

RA is an employee of Kaiku Health Ltd. The other authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Application development. Steps of the application development until the feasibility study
Fig. 2
Fig. 2
Patient adherence to the weekly questionnaire over the 6-month study time
Fig. 3
Fig. 3
Reported symptoms. Grade 1 corresponds to mild and grade 2 to moderate symptoms, which both resulted in self-management advice for the patients, and grade 3 corresponds to severe symptoms, sending out additionally an alert to the patients and physicians
See this image and copyright information in PMC

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