Abstract
Endometriosis is a common condition which affects women in a number of ways and impairs their ability to live a full and meaningful life. Evaluative research has traditionally taken its cue from a medical approach which has forced women to choose one area of functioning as their primary concern, and tended to use a narrow definition of treatment success which ignores general well-being. While recent trials have included quality of life (QOL) measures as outcomes, these have not been able to capture the totality of the impact of the disease and its treatment on a woman's capability to do what she might want to do and be who she might want to be. A capability approach might overcome this barrier, but the available tools will need to be refined and validated in women with endometriosis before this can be integrated within everyday clinical and research practice.
Highlights
One in ten women of reproductive age lives with endometriosis
In this article we review outcomes reported in randomised trials of treatments for endometriosis and tools used to measure these
Balfort et al [12] used the European Quality of life 5 dimension (EQ-5D) index summary, the short form 12 (SF-12) and the Endometriosis Health Profile-30 (EHP-30). These data confirm the traditional emphasis on pain and fertility, rather than quality of life (QOL) as primary outcomes in those undertaking randomised trials in endometriosis as well as those engaged in evidence synthesis
Summary
One in ten women of reproductive age lives with endometriosis. The proliferation of hormone sensitive endometrial cells outside the uterus leads to cyclic bleeding, inflammation, and scarring— mainly within the pelvis and, occasionally, other parts of the body [1]. In this article we review outcomes reported in randomised trials of treatments for endometriosis and tools used to measure these. Balfort et al [12] used the European Quality of life 5 dimension (EQ-5D) index summary, the short form 12 (SF-12) and the Endometriosis Health Profile-30 (EHP-30) These data confirm the traditional emphasis on pain and fertility, rather than QOL as primary outcomes in those undertaking randomised trials in endometriosis as well as those engaged in evidence synthesis. EHP-30 is a disease-specific tool for endometriosis, but while it examines 11 different domains, it does not provide a single score for QOL, limiting its appeal amongst researchers seeking a single outcome for a clinical study [29]. This is a limitation of the review when considering its implications in a global context
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