An estimated 5-10% of reproductive age women have endometriosis. Despite the profound negative effects of this chronic condition on individual functioning and quality of life, diagnosis can take years or decades. During this time of delayed diagnosis, women suffer from chronic pelvic pain, menstrual irregularity, pain with intercourse and infertility among other physical symptoms. They also report psychological suffering in the form of social isolation, anxiety and depression. These overwhelming symptoms affect their work productivity and result in high medical costs and substantially diminished quality of life. The high bar for definitive diagnosis, surgical assessment with histological confirmation, leaves women without access to care with longer delays in diagnosis. Women of lower SES and minority races have been conspicuously underrepresented in endometriosis research. Although there have been studies to examine the experiences of women with endometriosis and delay in diagnosis, there is a large gap in the literature regarding the diagnostic pathways women travel and the pre-diagnostic period especially among lower SES and non-white women in the United States. This study will apply a life course perspective to a diverse sample of women to examine patient behavioral and environmental factors influencing symptom recognition, health maintenance and help-seeking to better understand the pathways to diagnosis experienced by women with endometriosis.
Aim one proposes to map pathways to diagnosis using qualitative interviews and analysis informed by a life course perspective through two sub-aims. This will be accomplished by (1) describing pathways and experiences of the women?s symptom recognition, appraisal and management and (2) identifying differences in pathways and experiences among a socio-economically and racially diverse group of women. Furthermore, this study is innovative in considering the perception of women with regard to the time to diagnosis and its implications for their lives.
Aim two will determine the factors and symptoms shared among women who perceived the time to diagnosis as timely and to those who perceived the time as delayed. Understanding pathways to diagnosis across SES and race for women in the United States is vital to helping them to recognize symptoms and seek help for a timely diagnosis.
This proposed project addresses NINR?s Innovative Question in Symptom Science 1-3, ?How do lifestyle factors, environmental conditions, symptom clusters and symptom treatments impact quality of life and symptom management in different chronic conditions?? Findings from this proposed study are critical for mapping the pathways to diagnosis of endometriosis, particularly for women of non-white races and lower SES, and learn about the perceptions of women with regard to their time to diagnosis. Understanding the social and environmental factors that influence women?s symptom recognition, health maintenance and help- seeking will lead to targeted interventions to improve their interaction with the health system and reach more efficient diagnoses for their health and wellness.
