Page 12 - Shared Guideline Development Experiences in Fertility Care

Chapter 1
General introduction
Healthcare is fragmented and does not pay enough attention to patients’ needs and values. As is true of other diseases that require complex multidisciplinary care, reproductive care is generally o ered by various types of independently organized professionals (e.g. general practitioners, gynaecologists, and urologists). Furthermore, the care provided is usually based on evidence or professional consensus irrespective of patients’ needs and values. Well-developed clinical practice guidelines (CPGs) could be valuable tools to close the gap between this fragmented continuum of evidence-based reproductive healthcare and infertile couples’ need to be in charge of their own care pathway.
However, individual professionals are traditionally the ones who de ne and describe optimal patient care in CPGs, as well as develop performance measurements for monitoring the quality of care [1, 2]. A reliable contribution of other stakeholders – especially infertile patients – is mostly lacking. Furthermore, guideline development methodologies mainly focus on the disease instead of on patients’ clinical pathways [3]. Hence, William Murphy’s statement (see the cover to this thesis) does not apply to guideline development in fertility care at all: infertile patients are not in the centre! erefore, this thesis focuses on shi ing the role of Dutch infertile patients in guideline development from the periphery towards the centre and introduces “shared guideline development” in fertility care.
is introductory chapter will start with a description of the actual prevalence of infertility and infertile patients’ clinical pathways according to the treatment options that are currently available in the Netherlands. Next, the importance of patient-centredness in fertility care will be addressed. ird, the process of guideline and quality indicator development will be described and the potential role of patients in these development processes will be addressed. Fourth, an overview of guidelines and performance measurements that are currently available for Dutch fertility care will be provided and the role that patients have played in the development process will be addressed. Lastly, this introduction will end with the research questions that led to the studies performed within this thesis, as well as with a brief outline of the thesis.
10