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Logistics of collecting patient-reported outcomes (PROs) in clinical practice: an overview and practical examples

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Abstract

Purpose

Interest in collecting patient-reported outcomes (PROs), such as health-related quality of life (HRQOL), health status reports, and patient satisfaction is on the rise and practical aspects of collecting PROs in clinical practice are becoming more important. The purpose of this paper is to draw the attention to a number of issues relevant for a successful integration of PRO measures into the daily work flow of busy clinical settings.

Methods

The paper summarizes the results from a breakout session held at an ISOQOL special topic conference for PRO measures in clinical practice in 2007.

Results

Different methodologies of collecting PROs are discussed, and the support needed for each methodology is highlighted. The discussion is illustrated by practical real-life examples from early adaptors who administered paper–pencil, or electronic PRO assessments (ePRO) for more than a decade. The paper also reports about new experiences with more recent technological developments, such as SmartPens and Computer Adaptive Tests (CATs) in daily practice.

Conclusions

Methodological and logistical issues determine the resources needed for a successful integration of PRO measures into daily work flow procedures and influence significantly the usefulness of PRO data for clinical practice.

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Authors and Affiliations

  1. Dept of Psychosomatic Medicine, University Clinic Eppendorf, Hamburg, Germany

    Matthias Rose

  2. QualityMetric, Lincoln, RI, USA

    Matthias Rose

  3. Dept of Radiation Oncology, Princess Margaret Hospital, University Health Network, University of Toronto, Toronto, ON, Canada

    Andrea Bezjak

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Correspondence to Matthias Rose.

Appendix

Appendix

There are an increasing number of vendors that provide ePRO assessments on PDAs, PC or via IVR for clinical trails. The authors of this paper have personal experience with the systems briefly described below. We do not have any financial interest in any of the companies listed.

The following two start-up companies established themselves solely specialized in the electronic assessment of PRO within clinical practice (and outside clinical trails). First is Cibait Inc. (www.cibait.de), located in Germany serving approximately 40 clinics within Europe since 2002. The Cibait software supports Internet assessment, as well as assessments using PDAs, or tablet-PCs as stand alone devices. They also provide CATs for routine use. Their devices work as stand-alone versions as well as connected to a central server.

The second is Dynamic Clinical System (DCS, www.dynamicclinical.com), which is a spinoff company from the development efforts described in this paper at the Dartmouth-Hitchcock Medical Center. Today, DCS provides its service mainly to orthopedic clinics, serving almost 40 differing departments in around 20 institutions the U.S. They currently offer their main mode of administration via the Internet, with patient’s access from home or table computer in the clinic, which needs to be connected to the Internet via WLAN.

CQ-Office is a standalone product developed at the Charité in Berlin. It provides a highly customizable solution for standard questionnaires administered on a PDA platform (Linux or Windows Mobile operation system). The software is shareware, freely available but must be maintained by the user (for more information e-mail psychosomatik@uke.de).

One of the earliest ePRO assessment tools to our knowledge is the Quality of Life Recorder (www.ql-recoder.com) developed in Munich, Germany over 20 years ago. There have been many modifications. The software is free for students, but the systems can also be obtained as a commercial solution with the software preinstalled on a special hardware similar to a small tablet-PC.

We also like to mention one software solution called Chronorecord (www.chronorecord.org) as an example for a specific use of PRO assessments for a particular disorder. The software is developed to monitor patients with bipolar disorder.

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Rose, M., Bezjak, A. Logistics of collecting patient-reported outcomes (PROs) in clinical practice: an overview and practical examples. Qual Life Res 18, 125–136 (2009). https://doi.org/10.1007/s11136-008-9436-0

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