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

Eur J Cancer Care (Engl). 2019 Nov;28(6):e13154. doi: 10.1111/ecc.13154. Epub 2019 Aug 29.


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.

Keywords: cancer registry; clinical routine; electronic patient-reported outcome monitoring; health-related quality of life; implementation; multiple myeloma.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude of Health Personnel
  • Austria
  • Feasibility Studies
  • Female
  • Health Information Systems
  • Health Personnel / psychology
  • Health Plan Implementation
  • Humans
  • Male
  • Middle Aged
  • Multiple Myeloma / psychology*
  • Patient Preference
  • Patient Reported Outcome Measures*
  • Quality of Life
  • Registries*
  • Surveys and Questionnaires