Diagnosis Delay and Assessment of the Quality of Life of Patients with Endometriosis Using the Endometriosis Health Profile 5 Questionnaire in a Sub-Saharan Population

Abstract

Context: Endometriosis is a pathology that directly affects the daily lives of women with frequent impairment of their quality of life. In our environment, medical, socio-cultural, financial factors and factors related to the organization of the health care system greatly delay its diagnosis. The objectives of the present study were to determine the diagnosis delay and to assess the quality of life before surgery of women with endometriosis using the specific Endometriosis Health Profile 5 (EHP-5) questionnaire. Methods: We carried out a descriptive, observational, retrospective study in 8 medical centers in the City of Kinshasa, from January 2019 to October 2022. A total of 80 women with endometriosis confirmed by laparoscopy (16 diagnostic and 64 operative laparoscopies) and histopathology were interviewed. We used the revised American Society for Reproductive Medicine (rASMR) classification, the Endometriosis Fertility Index (EFI) score was calculated for infertile women and the EHP-5 questionnaire to assess quality of life. Our data was entered and analyzed using Statistical Analysis Software 16.1 (STATA 16.1). Results: Diagnosis delay of endometriosis was on average 12 ± 4.3 years. The overall mean EHP-5 score of all patients showed a severe deterioration in quality of life (604 ± 235). A negative relationship was observed between the age of the patient, the diagnostic delay, and the alteration of the quality of life in patients over 36 years old and those with about 11 years of diagnostic delay presenting the slight alteration. Patients with a high social level had very severe quality impairment. Women on hormonal treatment, those with a history of pregnancy, childbirth, miscarriage and abortion had a slight and significant deterioration in quality of life (p 0.05). Conclusion: Despite some limitations, our preliminary study highlights that in sub-Saharan Africa, the diagnosis of endometriosis is delayed and associated with a severe alteration in quality of life. Moreover, diagnosis of endometriosis seems to be restricted to women with high social levels. Therefore, further efforts are required to develop a health policy to decrease delay for diagnosis with potential benefits on symptoms, quality of life, fertility while limiting stigma and psychological effects of this debilitating pathology.