Development of guideline-based indicators for patient-centredness in fertility care: what patients add

What value can patients add to the development of guideline-based quality indicators for patient-centredness in fertility care?

Infertile patients mainly select different indicators and value different dimensions of patient-centredness (e.g. information and communication and access to care) than professionals (e.g. coordination and integration of care) during an indicator development process.

Patient-centredness is an important dimension for the quality of fertility care. However, this dimension is not adequately evaluated by professionals, due to a lack of quality indicators. Furthermore, it is suggested that patients select different indicators for patient-centredness than professionals, although exact differences are unknown.

The RAND-modified Delphi method (a two-step systematic consensus method) was used to develop two sets of quality indicators for patient-centredness. Similarities and differences in the indicators as well as in aspects of patient-centredness between patients' and professionals' sets of indicators were analysed descriptively.

The development of 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).

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. These regarded the need to perform IUI at least 6 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 effects on their chance of pregnancy of the elimination of a harmful lifestyle and provide information on the negative consequences for achieving a pregnancy in case of a high BMI. Both patients and professionals put 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.

First, the total number of developed indicators in the final set is relatively large (n = 29), which could be a first potential limitation in its use for accreditation and quality monitoring. Secondly, although panel members were asked to take reliability into account during the selection procedure, the indicators still need an evaluation of the measurability and the intra- and inter-observer reliability.

The final 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 be the application of this set in a future practice test to assess the feasibility in daily practice. In our opinion, most quality indicators for patient-centredness could be used for monitoring and improving the quality of fertility care internationally, occasionally by a more broad interpretation (e.g. by replacing the general practitioners with other healthcare professionals engaged in the care process).

This study was supported by a research grant (number 150020015) from the Dutch Organisation for Health Research and Development (ZonMw) in a research programme on broadening and acceleration in multidisciplinary guideline development. The authors have no conflicts of interest to declare.