The Barriers That Adolescents and Young Adults with Endometriosis Experience in the United States: A Conceptual Review and Model

Endometriosis is a chronic disease that vastly impacts patients’ lives, especially those who do not know how to manage the disease, understand the treatment options, or find specialists who can provide the proper care. The aim of this review and conceptual model is to provide a public health foundation for physicians and health care providers to further understand the barriers to endometriosis treatment that young adults and adolescents with endometriosis (10–25 years of age) experience grounded by theory and constructs.

A search was performed on PubMed with mix of MesH headings and keywords such as “adolescent,” “Adult, Young,” “United States,” Endometriosis,” and “Barrier.” Papers were reviewed through an inclusion/exclusion process to reduce bias. All papers that were excluded had no relevance to endometriosis, young adults, and adolescents, or were not located in the United States.

Our conceptual model presents the individual factors within the social ecological model (SEM), belief model, social cognitive theory (SCT) (outcome expectations, observational learning), social support, theory of fundamental causes (stigma, racism and discrimination, the built environment, lack of health policies, high costs, lack of health literacy among patients, lack of knowledge among providers), experiences, and outcomes.

The conceptual model and critical review highlight the intertwined, multi-faceted barriers that patients face to endometriosis treatment at each level of the SEM and may serve as an excellent starting point for future research.

There are no existing policies for endometriosis patients. This is the first conceptual model to include multiple public health theories in relation to endometriosis and can best guide policy makers, program development, public health interventions, and researchers in mitigating patient barriers.