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.