Dunja Dreesens

134 In 2016, the working group introduced the Evidence to Decision framework which would support making well informed healthcare choices and formulate guideline recommendations. The article starts with “Clinicians regularly face situations with two or more alternative actions. Each alternative often has different advantages and disadvantages, including differences in effectiveness, adverse effects, costs and other factors (criteria). To make these choices, clinicians rely on recommendations from clinical practice guidelines, other recommendations (such as from colleagues or experts) or implicit rules for decision making, such as based on their personal experience or what others do.” (318). First, I find it is striking that patients are not mentioned; they are faced with these choices as well. Moreover, the Working Group seems to limit evidence mainly to research evidence. The presented framework is however not devoid of patient input. For example, when there is uncertainty about how much the patients value the outcomes or unpredictability in how patients value the main outcomes (meaning that patients with different values might make other decisions), they recommend formulating a weak recommendation (196, 318). However, in daily practice this often means that the language used in the recommendation is less firm, using words like ‘consider’. It is not a preference- sensitive recommendation if options and patient preferences are not specified in the guideline recommendation. From that perspective, I would prefer the term ‘conditional recommendation’ as it indicates that the decision(s) to be made are subject to certain conditions, may that be uncertainty of the outcome or patient preferences. Another reason why I prefer the term ‘conditional’ to ‘weak’ is that to me there is a (un)conscious devaluation of the recommendation by calling it weak, when perhaps it might lead to more optimal care by being more preference- sensitive or conducive to shared decision-making. Including patient preferences or making CPGs more preference-sensitive is not easy, as was shown by Utens et al. For example, research on patient preferences is done by various domains, which is not always considered when searching for evidence and there exists a great variety in the terms and definitions that are used for preferences, which complicates searching and synthesizing evidence. Furthermore, it is unclear how to integrate such evidence, and what weight patient preferences should have in relation to other decision criteria (319-321). Montori et al made a similar observation. When suggesting together with Hoffmann to connect EBM and SDM, in another article he and others were cautious regarding clinical practice guidelines and incorporating patient preferences. One reason being that access to generalizable preferences of patients is difficult and complex. Furthermore, lack of means and expertise might hinder integrating patient preferences or lead to so-called “tokenist patient involvement” in guideline development. They therefore advise that guideline working groups should recognize that guideline recommendations should seldom accept uniform patient preferences and contexts in favour of a specific course of action and should embrace ambiguity more (322). Even though it might not be common practice yet, there is an increase in clinical practice guidelines that include patient preferences and/or SDM (199, 209, 278, 323). Other initiatives point in that direction as well; e.g. the DECIDE/MAGIC project that combines EBM and SDM (tools) (324, 325), as well as the Dutch ‘consultkaarten’ (326) in concordance with quality criteria for patient-directed tools related to CPGs (275). These examples, initiatives and the joint organisation of a conference by the International Society for Evidence-Based Health Care Chapter 7