Complementing clinical cancer registry data with patient reported outcomes: A feasibility study on routine electronic patient-reported outcome assessment for the Austrian Myelome Registry.

Autor:	Sztankay M; Medical University of Innsbruck, Innsbruck, Tirol, Austria.; Psychiatry II, Innsbruck University Hospital, Innsbruck, Tirol, Austria.; University of Innsbruck, Innsbruck, Tirol, Austria., Neppl L; Psychiatry II, Innsbruck University Hospital, Innsbruck, Tirol, Austria., Wintner LM; Medical University of Innsbruck, Innsbruck, Tirol, Austria.; University of Innsbruck, Innsbruck, Tirol, Austria., Loth FL; Psychiatry II, Innsbruck University Hospital, Innsbruck, Tirol, Austria., Willenbacher W; Internal Medicine V: Haematology & Oncology, Innsbruck University Hospital, Innsbruck, Tirol, Austria.; Oncotyrol-Center for Personalized Cancer Medicine, Innsbruck, Tirol, Austria., Weger R; Oncotyrol-Center for Personalized Cancer Medicine, Innsbruck, Tirol, Austria., Weyrer W; Internal Medicine V: Haematology & Oncology, Innsbruck University Hospital, Innsbruck, Tirol, Austria., Steurer M; Internal Medicine V: Haematology & Oncology, Innsbruck University Hospital, Innsbruck, Tirol, Austria., Rumpold G; Medical University of Innsbruck, Innsbruck, Tirol, Austria., Holzner B; Medical University of Innsbruck, Innsbruck, Tirol, Austria.; Psychiatry II, Innsbruck University Hospital, Innsbruck, Tirol, Austria.
Jazyk:	angličtina
Zdroj:	European journal of cancer care [Eur J Cancer Care (Engl)] 2019 Nov; Vol. 28 (6), pp. e13154. Date of Electronic Publication: 2019 Aug 29.
DOI:	10.1111/ecc.13154
Abstrakt:	Objectives: Routinely assessed patient-reported outcomes (PROs), such as quality of life (QOL), are important to supplement clinical cancer data but requires rigorous implementation. This study aims at depicting the implementation procedure and evaluating the feasibility of routine electronic PRO monitoring (ePRO) for collecting data supplementing the Austrian Myeloma Registry (AMR). Methods: Integration of ePRO monitoring into clinical routine was planned according to the Replicating Effective Programs framework. QOL data were assessed regularly during treatment and aftercare at the hematooncological outpatient unit at the Medical University of Innsbruck with the EORTC QLQ-C30/ +MY20 and the EQ-5D-5L. Feasibility and usability testing were performed via a multimethod approach. Results: Within the first year, 94.4% of the MM patients (N = 142, mean age 65.4, SD 11.8, 60% male) provided 748 PRO assessment time points overall. Patients and clinicians were satisfied with ePRO monitoring and indicated no to little disruption in clinical routine. Patient preference on assessment time points and completion frequency became evident. Conclusions: Complementing the AMR with ePRO data proved to be feasible. Our findings provide useful insights for healthcare providers considering introducing ePRO monitoring to their units for informing clinical registries as well as individualised feedback to patients alike. (© 2019 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)
Databáze:	MEDLINE
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