Page 38 - Shared Guideline Development Experiences in Fertility Care

Chapter 2
enabling to discuss emotional discomfort in the consulting room during daily care. Guideline recommendations based on this key clinical issue should therefore not only focus on ‘who’ and ‘when’, but also ‘how’ emotional support should be embedded within daily care provided by all involved fertility care professionals. Obviously, this addition highlights the surplus value of patient involvement in an early stage of the CPG development process.
Beside di erent interpretations of key clinical issues, infertile couples in our study also broadened the scope of the guideline by identifying eight additional main key clinical issues that would otherwise not have been recognized. ese main key clinical issues illustrate that patients do value or desire di erent aspects to be addressed in guidelines than their professionals. Professionals mainly consider multidisciplinary guidelines as instruments to reduce practice variation in speci c cases (i.e. due to unclear treatment criteria, policy and quality of performing diagnostics), to address evidence gaps and to enhance the overall organization of multidisciplinary care on a policy level (i.e. secure distribution of tasks between di erent professionals). Patients enlighten aspects of patient-centred care (i.e. emotional support, information provision) as well as concrete organizational aspects focusing on the gaps in between di erent phases of care that professionals have not been putted forward (e.g. poor alignment of care, the lack of care a er treatment) [47]. As widely discussed, complex and chronic care requires a uent organization and central points of improvement herein may be well recognized by patients surveying their whole care process [17, 48]. is is especially illustrated by the mentioned poor alignment of care in our study that has not been addressed in the literature on guideline development before.
e main strength of our study is that both infertile couples and professionals participated in it separately, which enabled us to assess patients’ added value to the scope of the guideline, covering all phases of care. Additionally, our scoping approach to CPG development provides a unique opportunity to reveal main key clinical issues, which are directly usable in formulating key questions as the next step of the CPG development process.
However, some limitations to our study need to be addressed. One may argue whether this approach can be directly translated to an international level, since for example some organizational and reimbursement aspects have been arranged di erently elsewhere. However, also in other countries, di erent professionals treat patients, with comparable problems in patient-centred and organizational issues [37-39]. Furthermore, we acknowledge that the consecutive recruitment of
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