Page 169 - Shared Guideline Development Experiences in Fertility Care

asked patients to select their top ve or top three recommendations for each of the ve sections on fertility care. Finally, the guideline development group assessed the eligibility of the nal set of recommendations within the scope of the guideline. e wiki attracted 298 unique visitors, yielding 289 recommendations. We assessed the 21 recommendations ranked as the top ve or top three for their eligibility for being integrated into the clinical practice guideline. e evaluation identi ed some challenges needed to be met to improve the wiki tool, namely its ease of use, website content and layout, and characteristics of the wiki tool.
We concluded that the wiki is a promising and feasible participatory tool for patients in guideline development. A modi ed version of this tool, including new modalities (e.g. automatically limiting the number and length of recommendations, using a xed format for recommendations, including a motivation page, and adding a continuous prioritization system), should be developed and evaluated in a patient-centred design.
In Chapter 5 the use and bene ts of a specialized online participatory tool to facilitate patient partnership in guideline development were evaluated. is specialized tool was developed and based on the barriers and facilitators that resulted from a previous pilot study on a wiki tool as described in Chapter 4. To answer the question a mixed method evaluation was applied. Outcome measurements for use included: actual use (number of unique visitors, number of registries, and number of visits), the usability of the tool measured on a SUS- scale (0–100), and representativeness of users compared to a valid representative Dutch hospital cohort. Outcome measurements for bene ts on guideline development included: number of new and modi ed recommendations, number of prioritizations, and the change over the time period (months) of the top ve recommendations.
In 12 months, the specialized participatory tool welcomed 3028 unique visitors,
of which 87 registered. e tool enabled a broad and mostly representative
target group regarding their age, type of infertility, and duration of childlessness
compared to a hospital group. e visitors delivered a set of 50 clear and prioritized recommendations for guidelines on Dutch fertility care. According to 39 out of 45
registries the tool was quali ed as highly usable. 8 We concluded that the specialized online participatory tool is a feasible method
to involve a broad group of generally representative infertile patients in guideline development. is study adds to current knowledge using online tools to facilitate
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