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Open Access 01-02-2020 | Multiple Myeloma

Strategies to improve patient-reported outcome completion rates in longitudinal studies

Authors: Lene Kongsgaard Nielsen, Madeleine King, Sören Möller, Mary Jarden, Christen Lykkegaard Andersen, Henrik Frederiksen, Henrik Gregersen, Anja Klostergaard, Morten Saaby Steffensen, Per Trøllund Pedersen, Maja Hinge, Mikael Frederiksen, Bo Amdi Jensen, Carsten Helleberg, Anne Kærsgaard Mylin, Niels Abildgaard

Published in: Quality of Life Research | Issue 2/2020

Abstract

Purpose

The quality of patient-reported outcome (PRO) data can be compromised by non-response (NR) to scheduled questionnaires, particularly if reasons for NR are related to health problems, which may lead to unintended bias. The aim was to investigate whether electronic reminders and real-time monitoring improve PRO completion rate.

Methods

The population-based study “Quality of life in Danish multiple myeloma patients” is a longitudinal, multicentre study with consecutive inclusion of treatment-demanding newly diagnosed or relapsed patients with multiple myeloma. Education of study nurses in the avoidance of NR, electronic reminders, 7-day response windows and real-time monitoring of NR were integrated in the study. Patients complete PRO assessments at study entry and at 12 follow-up time points using electronic or paper questionnaires. The effect of the electronic reminders and real-time monitoring were investigated by comparison of proportions of completed questionnaires before and after each intervention.

Results

The first 271 included patients were analysed; of those, 249 (85%) chose electronic questionnaires. Eighty-four percent of the 1441 scheduled PRO assessments were completed within the 7-day response window and 11% after real-time monitoring, achieving a final PRO completion rate of 95%. A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring.

Conclusions

Electronic reminders and real-time monitoring contributed to a very high completion rate in the study. To increase the quality of PRO data, we propose integrating these strategies in PRO studies, however highlighting that an increase in staff resources is required for implementation.

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Title: Strategies to improve patient-reported outcome completion rates in longitudinal studies
Authors: Lene Kongsgaard Nielsen
Madeleine King
Sören Möller
Mary Jarden
Christen Lykkegaard Andersen
Henrik Frederiksen
Henrik Gregersen
Anja Klostergaard
Morten Saaby Steffensen
Per Trøllund Pedersen
Maja Hinge
Mikael Frederiksen
Bo Amdi Jensen
Carsten Helleberg
Anne Kærsgaard Mylin
Niels Abildgaard
Publication date: 01-02-2020
Publisher: Springer International Publishing
Keyword: Multiple Myeloma
Published in: Quality of Life Research / Issue 2/2020
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-019-02304-8

At a glance: The STEP trials

Springer Medicine

Strategies to improve patient-reported outcome completion rates in longitudinal studies

Abstract

Purpose

Methods

Results

Conclusions

At a glance: The STEP trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

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