Page 156 - Shared Guideline Development Experiences in Fertility Care

Chapter 7
involvement in guideline development leads to a higher quality of care. is thesis focussed on the added value of the involvement of patients in the scoping and writing phase of guideline development and the indicator development process (i.e. key clinical issues as input on key questions and recommendations being part of a Dutch national guideline on infertility and on quality indicators for patient- centredness). We focussed particularly on the evaluation of a new approach in terms of barriers, facilitators, suggestions for improvement, and the feasibility of a participatory tool to involve patients in the guideline development process. Among these outcomes, the e ect on the implementability of the guideline and on the quality of care have not been evaluated in the studies as presented in this thesis. ese nal outcomes need to be a topic of future studies.
Discussion of future research
In this thesis, we explored the added value of patients in several phases of the guideline development process. However, some questions remain unanswered, namely the impact of the level of patient involvement in guideline development on both the implementability of the guideline and on the quality of care. Firstly, to evaluate the impact on implementability, e Guideline Implementability Appraisal (GLIA) instrument can be used [75]. is instrument is based on a set of guideline characteristics that predict potential challenges of e ective implementation. However, implementation is determined by both intrinsic and extrinsic factors, and the latter is not included in this instrument [76]. Studies to compare the level of implementation of guidelines developed with a high level of patient involvement to guidelines developed without involving patients are generally impossible. e content of the guidelines would not be comparable since patients can broaden the scope of the guideline and add recommendations. Furthermore, extrinsic factors that determine implementation, such as di erences in the organization of healthcare professionals between hospitals, would make it bias sensitive.
Next, to evaluate interventions for healthcare improvement, performing a randomised controlled trial (RCT) is considered the gold standard in implementation research. However, it could be debated whether the impact of patient involvement on the quality of care could be captured within a study design as a (clustered) RCT. In practice, developing two types of guidelines crosses ethical barriers (i.e. stakeholders’ participation could have been pointless in
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