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The development of a clinical outcomes survey research application: Assessment CenterSM

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Abstract

Introduction

The National Institutes of Health sponsored Patient-Reported Outcome Measurement Information System (PROMIS) aimed to create item banks and computerized adaptive tests (CATs) across multiple domains for individuals with a range of chronic diseases.

Purpose

Web-based software was created to enable a researcher to create study-specific Websites that could administer PROMIS CATs and other instruments to research participants or clinical samples. This paper outlines the process used to develop a user-friendly, free, Web-based resource (Assessment CenterSM) for storage, retrieval, organization, sharing, and administration of patient-reported outcomes (PRO) instruments.

Methods

Joint Application Design (JAD) sessions were conducted with representatives from numerous institutions in order to supply a general wish list of features. Use Cases were then written to ensure that end user expectations matched programmer specifications. Program development included daily programmer “scrum” sessions, weekly Usability Acceptability Testing (UAT) and continuous Quality Assurance (QA) activities pre- and post-release.

Results

Assessment Center includes features that promote instrument development including item histories, data management, and storage of statistical analysis results.

Conclusions

This case study of software development highlights the collection and incorporation of user input throughout the development process. Potential future applications of Assessment Center in clinical research are discussed.

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Abbreviations

CAT:

Computerized adaptive test

CTQ:

Critical to quality

IRT:

Item response theory

JAD:

Joint application design

NIH:

National Institutes of Health

NINDS:

National Institutes of Neurological Disorders and Stroke

PRO:

Patient-reported outcomes

PROMIS:

Patient-reported outcome measurement information system

PRS:

Primary research sites

QA:

Quality assurance

SCC:

Statistical coordinating center

UAT:

Usability acceptability testing

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Acknowledgments

Primary funding for the Assessment Center application has been provided as part of several federally funded projects sponsored by the National Institutes of Health including the Patient-Reported Outcomes Measurement Information System (PROMIS; U01 AR052177), Neurological Quality of Life (Neuro-QOL; HHSN 2652004236-01C), Refining and Standardizing Health Literacy Assessment (RO1 HL081485-03), the NIH Toolbox for the Assessment of Neurological and Behavioral Function (AG-260-06-01) and a recent award as the PROMIS Technology Center (U54AR057943). The authors would like to acknowledge the editorial assistance of Lani Gershon.

Author information

Authors and Affiliations

  1. Department of Medical Social Sciences, Northwestern University, 625 North Michigan Avenue, Suite 2700, Chicago, IL, 60611, USA

    Richard Gershon, Nan E. Rothrock & Rachel T. Hanrahan

  2. Westat, Rockville, MD, USA

    Liz J. Jansky

  3. University of Washington, Seattle, WA, USA

    Mark Harniss

  4. National Heart, Lung, and Blood Institute, Bethesda, MD, USA

    William Riley

Authors
  1. Richard Gershon
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  2. Nan E. Rothrock
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  3. Rachel T. Hanrahan
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  4. Liz J. Jansky
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  5. Mark Harniss
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  6. William Riley
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Corresponding author

Correspondence to Richard Gershon.

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Gershon, R., Rothrock, N.E., Hanrahan, R.T. et al. The development of a clinical outcomes survey research application: Assessment CenterSM . Qual Life Res 19, 677–685 (2010). https://doi.org/10.1007/s11136-010-9634-4

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