Introduction
Patient centeredness, which is guided by patients’ values, needs and preferences is an important quality dimension in modern healthcare (1). This approach is especially relevant in patients suffering from endometriosis, since endometriosis affects all facets of life (work, mood, quality of life, relationships, sexuality) (2). Even though endometriosis is a benign disease, it can cause significant decrease in the quality of life (QoL), social participation (e.g. loss of productivity) and sexual health (3) (4). Therefore, it is extremely important to realise that effective treatment goes beyond a purely somatic approach and should be patient centered.
Endometriosis is a disease in which endometrium-like tissue grows outside the uterus inducing chronic inflammation and adhesion formation (5). Numerous treatment options are available for endometriosis, but there are two main strategies: conservative treatment (analgesics and/or hormones) and surgical treatment. However, none of these options offer a complete curation, making endometriosis a chronic condition. Therefore, the main goal of these treatments is not to cure but to reduce pain, prevent further organ damage (e.g. ureteric obstruction), increase QoL and (potentially) increase the chance of pregnancy (6). Available data suggest that both conservative and surgical treatment are effective in reducing pain (7). The improvement of fertility chances with surgical treatment options remains uncertain, due to inconclusive study results on this topic (8). Although most of the treatment options are proven to be effective in reducing pain, they unfortunately do not come without consequences. On the one hand conservative treatments may have potential harmful side effects (e.g. depressive mood, weight gain, osteoporosis, menopause, decreased libido, headaches) which may cause treatment failure. Other reasons for treatment failure include therapy noncompliance or contraindications (deep venous thrombosis, other cardiovascular disease, hormone-sensitive tumours, active wish to conceive etc.) (7). On the other hand, surgical treatment options have the possible risks of severe complications and recurrence of disease. DE surgery is associated with significant complication rates up to 14% (9), which include bowel injury, anastomosis leakage, temporary or permanent stoma placement, urinary tract injury, formation of recto and or vesicovaginal fistulas (10). Making a careful and well-considered choice in endometriosis treatment options is especially relevant for deep endometriosis (DE), since these patients have to deal with complex treatment trade-offs.
In patient centered health care, decisions about treatment options are preferably made in consultation between the physician and the patient (11). Therefore, gynaecologists need to inform patients optimally by providing extensive information on the pros and cons of each treatment and by supporting the decision making process. This can only be achieved when gynaecologists are trained in guiding shared decision making (SDM) and understand which risks and benefits may be important to patients. Unfortunately, limited research has been performed to study the value and preferences in women with DE, which makes optimal counselling challenging. In addition, there is no conclusive evidence to advise patients for a particular treatment that is clearly superior. This makes preference sensitive care the most suitable form to use (12). In preference sensitive care, it remains important to make a well-considered choice that includes the patient’s wishes, priorities, risks and benefits. Especially for women suffering from endometriosis, the decision making process can be difficult and complex, since it is not only a matter of choosing pills or surgery. Their choice is also highly dependent on the different phases of life (school going, career/work, wish to conceive or not), and some choices can have lifelong consequences (hysterectomy, low anterior resection etc.). Therefore, optimal counselling is mandatory to assist these women in their decision making.
A technique to gain insight in treatment preferences is a so-called discrete choice experiment (DCE). This DCE technique assumes that patients value different characteristics of a treatment, (e.g. pain reduction, pregnancy chance, risk of complications) which will determine their preference. When presenting different choices, patients will usually choose the option that is most beneficial (13, 14).
This study aims to investigate patients’ preferences in DE treatment options for conservative or surgical treatment options and which characteristics are relevant in their treatment choice. To achieve this, we performed a labeled discrete choice experiment.