Page 168 - Shared Guideline Development Experiences in Fertility Care

Chapter 8
infertility, unexplained infertility, male infertility, and semen analysis. e multidisciplinary guideline included recommendations for the main medical- technical matters and for organizational and patient-centred issues in clinical care pathways. e project was carried out as planned except for minor modi cations and three extra consensus meetings. e participants were enthusiastic about the approach, the respect for autonomy, the project coordinator’s role, and patient involvement. Suggestions for improvement included timely communication about guideline formats, the timeline, participants’ responsibilities, and employing a librarian and more support sta . e 35 participants spent 4497 hours in total on this project. We concluded that the novel patient-centred network approach is feasible for simultaneously and collaboratively developing a harmonized set of multidisciplinary and monodisciplinary guidelines around clinical care pathways for patients with fertility problems. Further research is needed to compare the e cacy of this approach with more traditional approaches.
Chapter 4 and Chapter 5 both focus on the third question:
To what extent does a participatory tool for Dutch infertile patients in guideline development provide a feasible tool to enhance shared guideline development, regarding its use, usability, bene ts for the guideline, users’ experiences with the tool, and implementability in other clinical areas?
To answer this question two feasibility studies were performed. In Chapter 4 the feasibility of a basic wiki as a participatory tool for patients in the development of a guideline on infertility was assessed. A multimethod evaluation strategy was used to assess the feasibility of the wiki as a participatory tool for patients in guideline development.
e evaluation included (1) the use of the wiki (number of page views and visitors), (2) bene ts of the wiki (i.e. number, content, and eligibility of the recommendations to be integrated into the guideline), and (3) patients’ facilitators of and barriers to adoption, as well as the potential challenges to be overcome in improving this wiki.
To obtain initial content for the wiki, we conducted in-depth interviews (n = 12) with infertile patients. Transcripts from the interviews were translated into 90 dra recommendations. ese were presented on a wiki. Over 7 months, infertile patients were invited through advertisements or mailings to formulate new or modify existing recommendations. A er modifying the recommendations, we
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