Page 150 - Shared Guideline Development Experiences in Fertility Care

Chapter 7
involvement still remains a challenge. Several underlying challenges regarding the involvement of patients in the main phases of the clinical guideline development process have been reported in published literature [2,31–33]. In Chapters 3, 4, and 5, we aimed to assess the added value of patients in scoping and writing clinical guidelines, as well as in developing guideline-based indicators, which facilitate the adherence to clinical practice guidelines.
Patients’ role in scoping the guideline
Scoping the guideline is the rst and most crucial step of the guideline development process. In this step the guideline development group de nes what should and should not be addressed in a new or revised guideline. Various approaches are applied to scope a guideline and identify clinical issues that need improvement, including focus groups or workshops with various allied stakeholders in the topic of the guideline, written questionnaires, discussion within the guideline development group itself, and a written consultation phase to comment on the scope of the dra [34,35]. Although several institutes use patient focus groups to gather input for guidelines, their impact on the scope remains unclear or is not the primary goal [34,35]. Most published initiatives on patient involvement focussed on the writing and reviewing phase of the guideline development process or on written consultation when the scope has already been dra ed [35–39]. One can question whether patients are able to have any in uence on the scope when they are not involved until a er the scope has been dra ed. In Chapter 3, we aimed to assess the added value of patients in scoping a Dutch guideline on infertility. is study demonstrated that patients can broaden the scope of a guideline on infertility, as they suggested di erent key clinical issues (e.g. issues that need improvement and should be addressed in the clinical guideline) than did the professionals. Furthermore, patients addressed patient-centred aspects of professionals’ key clinical issues (Figure 1). is nding corresponds to the results of other studies on the assessment of the quality of fertility care, which have shown that patient-centredness is one of the key aspects among all six aspects that de ne the quality of care as proposed by the Institute of Medicine (IOM) [2,40–42]. However, professionals working in fertility care still overestimate their level of patient-centredness, demonstrating a poor correlation between patients’ and physicians’ perceptions of the quality of care [42]. is phenomenon has also been seen in healthcare areas other than fertility care [43–45].
is nding strengthens our recommendation to enable patients to play a key 148