Health-related quality of life burden of women with endometriosis: a literature review

PURPOSE: The purpose of this study was to conduct a comprehensive and systematic literature review of the health-related quality of life (HRQL) burden of endometriosis in adults and adolescents. METHODS: We conducted a systematic search and review of studies published between January 1999 and January 2006 using MEDLINE and relevant online resources. Search terms used included endometriosis, quality of life, burden of illness, psychology, and adolescent. We assessed: (1) the HRQL impact of endometriosis and related key symptoms; (2) the impact of specific pharmacologic and surgical treatments of endometriosis on HRQL; and (3) the presence and impact of endometriosis in adolescents. RESULTS: Twenty relevant studies were identified and reviewed. Generic instruments most commonly used to assess HRQL in patients with endometriosis included the SF-36 and the SF-12. The EQ-5D was used to measure utilities. The Endometriosis Health Profile-30 (EHP-30) and its subset, the EHP-5, have been recently developed for use in endometriosis studies. Endometriosis was associated with significant impairments in pain, psychological functioning, and social functioning. Pharmacological and surgical treatments for endometriosis improved patients physical functioning, psychological functioning, vitality, pain level, and general health. Few studies used disease specific instruments to characterize the HRQL burden of endometriosis, addressed the HRQL impact of endometriosis-related infertility, and examined endometriosis in adolescents. Instruments specifically validated to measure HRQL in adolescents were not identified. CONCLUSIONS: Endometriosis impairs HRQL, especially in the domains of pain, psychological and social functioning. Therapies have been shown to alleviate symptoms and improve HRQL. Further research is warranted to evaluate the impact of endometriosis on HRQL in adolescents and the impact of infertility due to endometriosis on HRQL.