The development of a comprehensive multidisciplinary endometriosis and chronic pelvic pain center

Abstract

Endometriosis affects 2%–10% of reproductive-aged women and is one of the leading causes of chronic pelvic pain. Given the extensive diagnostic challenges, multi-system nature of the disease, and significant impacts on quality of life, there has been a long-standing recognition of the need for integrated and specialty care for women living with endometriosis. We present our experience with the development of a multidisciplinary center for endometriosis and chronic pelvic pain at the University of California San Francisco. We describe the core components of this treatment model, including (1) methods for clinical collaboration across diagnostic, medical, and surgical subspecialties; (2) promotion of surgical excision of endometriosis; (3) establishment of a patient navigator; (4) utilization of psychological interventions and integrative medicine; and (5) health care provider and community training. Since the introduction of the endometriosis center in November 2016, outpatient encounters for patients with a primary diagnosis of endometriosis increased from 2761 in 2016 to 3905 in 2018, demonstrating high demand for these services. We also highlight opportunities for collaborative research through de-identified patient surveys, clinical data, and biospecimen collection.

How Women with Endometriosis Experience Health Care Encounters

“…Focusing on these issues there are some suggestions for developing endometriosis and pain centers, by using patient navigators, and working multidisciplinary. 42 Our third fusion that competence promotes health, which is included in this theme, is the only fusion that brings forth some positive aspects acknowledged in the analyzed studies. That competency promotes health is often mentioned in one or two sentences here and there in the overviews.…”

“…Focusing on these issues there are some suggestions for developing endometriosis and pain centers, by using patient navigators, and working multidisciplinary. 42 …”

The experiences of endometriosis patients with diagnosis and treatment in New Zealand

“…For the treatment of cancer patients, multi-disciplinary teams have shown improvements to patient outcomes by holistically assessing the status of the patient ( 18 ). For endometriosis, holistic pain management with multi-disciplinary teams have included practitioners such as pain specialists, physiotherapists, dieticians and psychologists to produce integrated plans to approach the patient's treatment ( 19 ). These types of approaches to pain management have shown to be an improvement to solely using pharmacological medications for pain management ( 19 ), however, both cost and time can be prohibitive factors for these types of schemes ( 18 ).…”

A survey exploring the use of symptom diary mobile apps for endometriosis

“…Obtaining clinically and/or scientifically useful pain data over time is notoriously difficult; if patients are already recording this information in mobile apps for their own use and are willing to share the data, there is a great potential for clinicians and researchers to utilise this data. Multidisciplinary clinics for the management of endometriosis are increasingly being utilised, 3,13,14 the use of long term symptom data across multiple domains (menstrual, pain, bowel, diet and psychological) presents significant potential to enhance patient management in this setting, as well as assess response to specific treatments. In a research domain, such data could be utilised to explore symptom patterns and interactions, correlate to surgical phenotyping or other investigations, assess response to treatment and a range of other possibilities.…”