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Supportive Care in Cancer
Published in: Supportive Care in Cancer 9/2015

Open Access 01-09-2015 | Original Article

An interactive portal to empower cancer survivors: a qualitative study on user expectations

Authors: Wilma Kuijpers, Wim G. Groen, Romy Loos, Hester S. A. Oldenburg, Michel W. J. M. Wouters, Neil K. Aaronson, Wim H. van Harten

Published in: Supportive Care in Cancer | Issue 9/2015

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Abstract

Purpose

Portals are increasingly used to improve patient empowerment, but are still uncommon in oncology. In this study, we explored cancer survivors’ and health professionals’ expectations of possible features of an interactive portal.

Methods

We conducted three focus groups with breast cancer survivors (n = 21), two with lung cancer survivors (n = 14), and four with health professionals (n = 31). Drafts of possible features of an interactive portal were presented as static screenshots: survivorship care plan (SCP), access to electronic medical record (EMR), appointments, e-consultation, online patient community, patient reported outcomes (PROs) plus feedback, telemonitoring service, online rehabilitation program, and online psychosocial self-management program. This presentation was followed by an open discussion. Focus groups were audiotaped, transcribed verbatim, and data were analyzed using content analysis.

Results

Important themes included fulfillment of information needs, communication, motivation, quality of feedback, and supervision. Cancer survivors were primarily interested in features that could fulfill their information needs: SCP, access to their EMR, and an overview of appointments. Health professionals considered PROs and telemonitoring as most useful features, as these provide relevant information about survivors’ health status. We recommend to minimally include these features in an interactive portal for cancer survivors.

Conclusions

This is the first study that evaluated the expectations of cancer survivors and health professionals concerning an interactive portal. Both groups were positive about the introduction of such a portal, although their preferences for the various features differed. These findings reflect their unique perspective and emphasize the importance of involving multiple stakeholders in the actual design process.
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Metadata
Title
An interactive portal to empower cancer survivors: a qualitative study on user expectations
Authors
Wilma Kuijpers
Wim G. Groen
Romy Loos
Hester S. A. Oldenburg
Michel W. J. M. Wouters
Neil K. Aaronson
Wim H. van Harten
Publication date
01-09-2015
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 9/2015
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-015-2605-0

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