Healthcare Providers' Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust

Endometriosis is a chronic and often painful inflammatory disease affecting one in ten biological females. It has been characterized as enigmatic and the average diagnostic delay is nearly seven years, time which patients experience as tumultuous and uncertain. This paper presents responses to a final open comment question of a large-scale survey documenting patients' experiences with (mis)diagnosis and highlights how patients perceived healthcare providers (HCPs) as barriers and facilitators to care. Drawing on a framework of trust, we observed that most participants, when discussing HCP-related barriers, raised concerns about HCPs' lack of technical competence, insufficient knowledge about endometriosis and inadequate medical training, followed by concerns about fidelity in which patients recounted experiences of their symptoms being trivialized or dismissed. Respondents also described a causal relationship between competence and fidelity, whereby a lack of competence was perceived to lead HCPs to be dismissive or neglectful. Respondents underscored how patient self-advocacy efforts and online patient communities helped them manage mistrust with HCPs. Although less frequently described, respondents also highlighted the value of HCPs as facilitators to care that similarly emphasized these two dimensions of trust and their inter-connectedness. We discuss the importance of HCPs in shaping patients' care experiences and, in particular, the value of trust for patients with endometriosis and likely other patient populations who seek legitimacy from the medical community but often feel unheard.