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

• DOI: 10.1111/ecc.13154
• Publication Date: 2019-08-29T15:30:00Z
• Authors: Monika Sztankay; Lucia Neppl; Lisa M. Wintner; Fanny L. Loth; Wolfgang Willenba...; Roman Weger; Walpurga Weyrer; Michael Steurer; Gerhard Rumpold; Bernhard Holzner
• Keywords: Adult; Aged, 80 and over; Male; Attitude of Health Personnel; Health Personnel; Health Plan Implementation; Patient Preference; Original Articles; Middle Aged; 3. Good health; Health Information Systems; 03 medical and health sciences; 0302 clinical medicine; Austria; Surveys and Questionnaires; Quality of Life; Feasibility Studies; Humans; Female; Patient Reported Outcome Measures; Registries; Multiple Myeloma; Aged

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).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.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.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.