Abstract
ObjectivesRoutinely 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).MethodsIntegration 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.ResultsWithin 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.ConclusionsComplementing 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.
Highlights
Due to increased availability of once so‐called novel agents in first‐ line treatment, the prognosis for patients suffering from multiple myeloma (MM) has been considerably improved within the last decade (Kumar et al, 2014; Mey et al, 2016)
This study aims at depicting the implementation procedure and evaluating the feasibility of routine electronic patient‐reported outcomes (PROs) monitoring for collecting data supplementing the Austrian Myeloma Registry (AMR)
Implementation of routine electronic PRO monitoring (ePRO) monitoring used a pragmatic strategy on the basis of the Replicating Effective Programs (REP) framework (Kilbourne, Neumann, Pincus, Bauer, & Stall, 2007) leveraging local healthcare providers’ initiative and outside ePRO expertise (Wintner et al, 2016)
Summary
Due to increased availability of once so‐called novel agents in first‐ line treatment (bortezomib and lenalidomide), the prognosis for patients suffering from multiple myeloma (MM) has been considerably improved within the last decade (Kumar et al, 2014; Mey et al, 2016). For patients with advanced disease, likewise, the number of available treatment options, similar in safety and clinical effectiveness, has substantially increased (Anderson, 2016; Orlowski & Lonial, 2016). PROs are defined as ‘any report of a patient's health condition coming directly from the patient, without interpretation by a clinician or anyone else’ (FDA, 2006). To realise their potential in informing oncological treatment and research, PROs need to be linked to patients’ clinical data such as those collected systematically by cancer registries. PROs can contribute information across the spectrum of cancer registry purposes by augmenting the evaluation of adverse events, determining comparative effectiveness of oncological treatment strategies or predicting meaningful clinical outcomes such as survival. PRO data provide crucial information for quality assurance, the allocation of health resources and the development as well as targeted provision of support services (Parkin, 2006)
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