Page 102 - Shared Guideline Development Experiences in Fertility Care

Chapter 5
Methods
Setting: Dutch fertility care
Infertility is estimated to a ect 80 million couples worldwide [22,23]. It is de ned as the couples’ inability to achieve pregnancy a er having at least one year of regular unprotected sexual intercourse [24]. In the Netherlands, fertility care has been publicly arranged on three levels. Primary care is provided by general practitioners (GPs) and may comprise part of an initial fertility assessment. If necessary, a GP can refer couples to a gynaecologist in a general (secondary care) or a university (tertiary care) hospital, who can complete this initial fertility assessment, determine a cause of infertility, and de ne a suitable treatment plan. If a severe male factor is diagnosed, couples are also referred to a urologist. Nurses, biochemists, and clinical embryologists are also involved in assessments and preparations for Medically Assisted Reproductive (MAR) techniques, such as In Vitro Fertilization (IVF). Since infertility has a high emotional and psychological impact, which may also interfere with people’s jobs, medical psychologists and occupational physicians are regularly involved in patients’ clinical care pathways [25]. e complexity of this condition a ecting young couples and its multidisciplinary care pathway possibly elucidates the active form in which Freya, the Dutch patients’ association for infertility, supports infertile patients (www.freya.nl).
Development of the tool
e principles guiding the initial design of the specialized online participatory tool for patients in CPG development were derived from a previous feasibility study on a basic wiki as a participatory tool for Dutch fertility patients in CPG development [20]. Based on these results, a prototype of the specialized online participatory tool for CPG development that can be adapted to every healthcare setting and usable for both end-users (i.e. guideline developers and patients) was developed and pilot tested.
Prototype development and pilot test
In January 2010, a multidisciplinary team (two clinical guideline developers, two gynaecologists, a website developer, and a board member of Freya) was assembled to develop a prototype of the specialized online participatory tool. Goals for improving the basic wiki tool included lowering the level of moderation of patients’ recommendations needed and increasing the direct usability of patients’
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