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

Abstract

BackgroundA 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.MethodsOur 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.ResultsA 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.ConclusionThe 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 NTR TC 5721.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-017-0505-6) contains supplementary material, which is available to authorized users.

What matters to me – a web-based preference elicitation tool for clients in long-term care: a user-centred design

“…It might have been beneficial to add a fourth phase to determine the stability of the coding sheet that was developed after the third phase, however, the development team approved all the findings and adjustments at the end of the third phase and during the invitational conference there were no new findings. The approaches described by Savelberg et al [26] and Garvelink et al [27] were combined and adapted to meet the aims of the web-based tool. Although this study was conducted in four long-term care sectors in the Netherlands, the study and the findings are generalizable to other settings.…”

“…A qualitative descriptive study was chosen to investigate the tool [25]. In line with studies of Savelberg et al [26] and Garvelink et al [27], the study consisted of three phases ( Fig. 1):…”

“…Video-audio recordings were made, and a researcher observed and made field notes. A topic guide based on literature was developed for each phase and reviewed by client representatives [26,27]. After each phase, a summarizing document containing all the feedback and comments of the users was compiled, including a proposal for adjustments to the tool.…”

What matters to me – A web-based preference elicitation tool for clients in long-term care: a user-centred design

“…A qualitative descriptive study was chosen to investigate the tool [25]. In line with studies of Savelberg et al [26] and Garvelink et al [27], the study consisted of three phases (Figure 1): Look and feel: The look included the attractiveness and layout of the tool. The feel was the impression of a person on looking at and using the tool.…”

“…A topic guide based on literature was developed for each phase and reviewed by client representatives [26,27]. After each phase, a summarizing document containing all the feedback and comments of the users was compiled, including a proposal for adjustments to the tool.…”