Page 170 - Shared Guideline Development Experiences in Fertility Care

Chapter 8
patient partnership in clinical guideline development. is thesis can be used as a practical guide for policy organizations, guideline developers, and patient organizations that are interested in interventions to facilitate patient partnership in clinical guideline development in any clinical setting.
Chapter 6 focuses on the fourth question:
What value do patients add to the development of guideline-based quality indicators for patient-centredness?
To answer this question the RAND-modi ed Delphi method (a two-step systematic consensus method) was used to develop two sets of quality indicators for patient- centredness. e development of these quality indicators for patient-centredness was based on the national multidisciplinary Network Guideline on infertility. Two panels participated: one patients’ panel (n= 19) and one multidisciplinary professionals’ panel (n=15). Similarities and di erences in the indicators and in aspects of patient-centredness between patients’ and professionals’ sets of indicators were analysed descriptively. From 119 formulated potential indicators of patient-centredness, the patients’ panel selected a representative set of 16, while the professionals’ panel selected 18. Five indicators were included in both sets. ese indicators regarded the need to perform IUI at least six days a week, report on treatment outcomes and complications, report on results of semen analyses in a standardized way, counsel infertile couples about the positive e ects on their chance of pregnancy of the elimination of a harmful lifestyle, and provide information on the negative consequences of achieving a pregnancy when the patient has a high BMI. Both patients and professionals put the highest value on potential indicators of information and communication in fertility care. Patients also emphasized accessibility of care, whereas professionals emphasized coordination and integration as important quality measures for patient-centredness in fertility care. Infertile patients mainly select di erent indicators and value di erent dimensions of patient-centredness (e.g. information, communication, and access to care) than professionals (e.g. coordination and integration of care) during an indicator development process.
erefore, we concluded that infertile patients add value to the development of guideline-based quality indicators for patient-centredness. e nal guideline- based indicator set, consisting of 29 indicators, represents a balanced set that is based on the expertise of all stakeholders, including patients. A next step should
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