Search

This thesis presented an overview of quality of care as experienced by women with endometriosis. The results are presented in three parts; Part I focused on investigating patient-centeredness of endometriosis care, Part II focused on patient preferences in fertility care in women with endometriosis, Part III focused on a serious complication in pregnancy in women with endometriosis: Spontaneous Haemoperitoneum in Pregnancy (SHiP). Finally, the discussion reflects on the results and puts forward new perspectives for the future.

In this dissertation, different aspects of the care for women with heavy menstrual bleeding were investigated. To begin with, interventions to reduce anxiety and pain during examinations were examined. For this purpose, the effects of an informative virtual reality video and listening to music during the procedure were investigated. Additionally, the most optimal method of local anaesthesia to perform endometrial ablation, a treatment for heavy menstrual bleeding, was studied. It turned out that the combination of anesthaesia around the cervix and anaesthesia in the fundus of the uterus is the most effective method. Furthermore, recovery after this treatment (endometrial ablation) was charted, allowing for better patient education on this topic. Finally, patient factors increasing the likelihood of endometrial ablation failure were examined. It turned out that women with painful menstrual periods, a history of sterilization and younger women have a higher chance of undergoing hysterectomy after endometrial ablation.

Endometriosis is a chronic disease characterized by the presence of uterine lining (endometrial)-like tissue outside the uterus. Endometriosis-related complaints, such as pain, have a huge impact on the quality of life of these women. There is a need for a reliable way of assessing symptoms with co-occurring factors as a large number of women continue to suffer from chronic pain despite medical treatment. This thesis describes the development of an endometriosis-specific smartphone app that is based on the experience sampling method (ESM) for real-time symptom assessment over time. The ESM provides real-life insight into physical, mood-related, and environmental factors, and measuring fluctuations of these symptoms could provide insight into sickness behaviour. Analysing direct associations could give clues for individualized treatment options which could reduce symptom burden. Furthermore, ESM is highly suitable to accurately evaluate the effect of new treatment options and behavioural therapies. In this thesis it is hypothesized that giving self-insight in symptoms could induce patient empowerment in clinical care in the future and will improve health outcomes.