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Usability of an online application for reporting the burden of side effects in cancer patients

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Abstract

Purpose

In the Netherlands, online patient reporting of side effects is a new phenomenon. The aim of this study was to gain insight into patients’ user experiences and the benefits of the web application BijKanker (‘AlongsideCancer’).

Methods

Patients in seven hospitals were asked to make entries in BijKanker at least once a week. On logging in to the application for the first time (T1), patients were asked to complete a questionnaire on information needs and Internet use. Four months after starting their treatment (T2), they were asked to complete a second questionnaire on their experiences with BijKanker and its four functions: information; reporting side effects; communication with oncology nurses and clinicians; and data feedback.

Results

Ninety-nine patients logged in to BijKanker, 60 patients (61%) had completed the first questionnaire (T1) and 40 (40%) had also completed the second questionnaire (T2). In total, 1661 side effects were reported. Generally, patients experienced BijKanker as user-friendly and patients appreciated the attention given to their side effects.

Conclusions

The user-centred design gives ample insight into user experiences and usability. The results provide useful starting points for improvements to the online application. We recommend to put much effort into supporting oncology nurses in the implementation of the application.

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Abbreviations

CTCAE:

Common Terminology Criteria for Adverse Events

HRQoL:

Health-related quality of life

IKNL:

The Netherlands Comprehensive Cancer Organisation

NPA:

Nurse Problem Analysis

PRO-CTCAE:

Patient-Reported Outcomes Common Terminology Criteria for Adverse Events

RCT:

Randomised clinical trial

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Acknowledgements

We wish to thank the patients and their nurses and doctors at the following hospitals in the Netherlands for their participation in this study: Bernhoven Uden, Elisabeth-TweeSteden Hospital Tilburg, Haven Hospital Rotterdam, Maastricht UMC, Medical Centre Alkmaar, Spaarne Hospital Haarlem, and ZorgSaam Terneuzen. Special thanks are due to Josca Heier-van Leerdam for her role as an advisor.

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Authors and Affiliations

  1. Department of Research, Netherlands Comprehensive Cancer Organisation (IKNL), 19079, 3501 DB, Utrecht, Netherlands

    Mies C. van Eenbergen, Corina van den Hurk, Floortje Mols & Lonneke V. van de Poll-Franse

  2. Department of Medical and Clinical Psychology, Tilburg University, Tilburg, Netherlands

    Floortje Mols & Lonneke V. van de Poll-Franse

  3. Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, Netherlands

    Lonneke V. van de Poll-Franse

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  1. Mies C. van Eenbergen
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  2. Corina van den Hurk
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  3. Floortje Mols
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  4. Lonneke V. van de Poll-Franse
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Correspondence to Mies C. van Eenbergen.

Ethics declarations

A declaration of no objection was granted by the Medical Ethics Review Committee Midden-Brabant (NW2015-17). All participants provided informed consent online.

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The authors declare that they have no conflict of interest.

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van Eenbergen, M.C., van den Hurk, C., Mols, F. et al. Usability of an online application for reporting the burden of side effects in cancer patients. Support Care Cancer 27, 3411–3419 (2019). https://doi.org/10.1007/s00520-019-4639-1

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