It is estimated that 1 in 6 women in their reproductive ages (and her partner if applicable) experience a period of unfulfilled child wish. Unfulfilled child wish is correlated with feelings of shame and guilt, low feelings of self-esteem and guilt, but also psychiatric disorders like anxiety and depression. In spite of all the technical possibilities for women/couples seeking medical help, a vast proportion of the women will nonetheless remain childless. Therefore, it is paramount that realistic expectations are created in patients seeking medical help as a basis for shared decision making, not only with regard to the medical outcomes, but also for the patient reported outcomes. Medical interventions should therefore not only be aimed at achieving a pregnancy but also at improving quality of life in all patients but especially in those patients in which a pregnancy is not achieved.
In the implementation phase of value based healthcare at the Isala Fertility Centre, an IPU was formed consisting of representatives of all medical professionals involved, among which gynaecologists, clinical embryologists, fertility doctors, nurses and complemented with patients. Since an ICHOM outcome set was not available for unfulfilled child wish, the IPU first had to define medical and patient reported outcomes that are truly relevant for patients. The most important traditional applied medical outcome, the (ongoing) pregnancy rate per treatment cycle of in vitro fertilization (IVF) or intrauterine insemination (IUI) was found inadequate since this does not reflect the full cycle of care which usually consist of multiple repetitive treatment cycles and the transition of less invasive to more invasive treatments. It was also acknowledged that the traditional medical outcomes were prone to window dressing and cherry picking. For patients the most important medical outcome measures were found to be the ongoing pregnancy rate and live birth rate for the full cycle of care and the time needed to reach that ongoing pregnancy starting from the first visit to our department. Next, the most important psychological parameters were defined, such as quality of life in general, depression and anxiety, but also the impact on social life and work and the relationship between partners including satisfaction with the sexual relationship. Validated questionnaires were selected and a system was put in place to sent out the questionnaires in half year intervals starting with the date of the first visit to our department.
Analysis of the data extracted from the electronic patient records, not on a per cycle basis but instead for the full cycle of care, already led to interventions that actually improve the medical outcomes, especially the time to pregnancy while at the same time reducing costs. The data on medical outcomes are transparent for patients in the consultation room with their treating physician, thus creating realistic expectations and are used for shared decision making. The results of the questionnaires regarding the patient reported outcomes are discussed in the consultation room, domains at risk are identified and interventions are suggested. This no doubt will result in an improved quality of life. Finally, partnerships are being developed with fertility centres in The Netherlands and Norway in order to learn from best practices.