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BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2017

Open Access 01-12-2017 | Research article

Developing a patient decision aid for the treatment of women with early stage breast cancer: the struggle between simplicity and complexity

Authors: W. Savelberg, T. van der Weijden, L. Boersma, M. Smidt, C. Willekens, A. Moser

Published in: BMC Medical Informatics and Decision Making | Issue 1/2017

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Abstract

Background

A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version.
Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals.

Methods

Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams.

Results

A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it.

Conclusion

The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing).

Trial registration

Appendix
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Metadata
Title
Developing a patient decision aid for the treatment of women with early stage breast cancer: the struggle between simplicity and complexity
Authors
W. Savelberg
T. van der Weijden
L. Boersma
M. Smidt
C. Willekens
A. Moser
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2017
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-017-0505-6

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