Page 166 - Shared Guideline Development Experiences in Fertility Care

Chapter 8
English Summary
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, reliable contributions of other stakeholders – especially infertile patients – are mostly lacking. Furthermore, guideline development methodologies mainly focus on the disease instead of on patients’ clinical pathways. erefore, we have attempted to put the patients in the centre of the various stages of the guideline development process. is thesis focuses on the experiences with 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.
e aim of this thesis, as outlined in Chapter 1, was to answer four speci c questions.
Chapter 2 focuses on the rst question:
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?
To answer this question a qualitative interview study was performed among 12 infertile couples and 17 professionals. We listed and compared the couples’ and professionals’ key clinical issues (i.e. care aspects that need improvement) to be addressed in the guideline according to four domains: current guidelines, professionals, patients, and organization of care. Main Outcome Measures of this study included the main key clinical issues, which were the key clinical issues suggested by more than three-quarters of the infertile couples and/or at least two professionals.
Overall, we identi ed 32 key clinical issues among infertile couples and 23 among professionals. Of the de ned main key clinical issues, infertile couples mentioned
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