Page 19 - Shared Guideline Development Experiences in Fertility Care

mostly monodisciplinary disease-centred CPGs that mainly refer to treatments 1 for infertility, the National Embryo Act, and various protocols on the performance
of various fertility treatments. Other allied Dutch societies that issued fertility
guidelines concern the Dutch society of Clinical Embryologists (KLEM) (i.e.
guideline on semen analysis), the Dutch College of General Practitioners (NHG) (i.e. standard on infertility), and the Dutch Society of Urologists (NVU) (i.e. guideline on male infertility). All Dutch guidelines on infertility had a monodisciplinary character and were mostly assessed to be of low quality by the AGREE instrument. is instrument is a 23 item-based validated instrument that assesses the methodological quality of CPGs on six domains: scope and purpose, stakeholder involvement, rigour of development, clarity and presentation, applicability, and editorial independence [39]. Remarkably, patient involvement in all these guidelines was lacking. Furthermore, guideline-based quality indicators related to any of these guidelines were absent.
Outline of this thesis
e aim of this thesis is to investigate ways to shi the role of Dutch infertile patients in developing guidelines from the outside to the centre through exploring methods for actively involving them in three di erent phases (e.g. scoping phase, development phase, implementation phase) of the Clinical Practice Guideline development process. Hence, we formulated the following research questions:
1) What value do patients add to the scope of a Dutch multidisciplinary guideline on infertility when comparing perceived key clinical issues between professionals and patients?
2) To what extent does a patient-centred network approach to multidisciplinary guideline development in infertility provide a feasible format regarding the actual performance of a set of guidelines, its time investments, and experiences with the approach?
3) 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?
4) What value do patients add to the development of guideline-based quality indicators for patient-centredness?
Introduction
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