Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis

Abstract

Endometriosis is a chronic, painful disease without a cure. Due largely to chronic pain, endometriosis can lead to significant physical, mental, relationship, and financial burdens. Within the conventional single provider model of care-in which the patient is primarily taken care of by her physician and complementary strategies based on psychology, nutrition, pain medicine, pelvic physical therapy, and so on may not be readily available in a coordinated manner-most women with endometriosis live with unresolved pain and the consequences of that pain. We therefore propose that there is an urgent need to search for alternative models of care. In the current paper, we discuss our experiences with an model of care in which we adopt a long-term, patient-focused, and multidisciplinary chronic care model for women with endometriosis. Our objective is to improve long-term clinical outcomes for women with endometriosis. For geographical areas and healthcare systems in which it is feasible, we propose consideration of this multidisciplinary model of care as an alternative to the single provider model and offer guidance for those considering establishment of such a program. We also initiate a conversation about which clinical outcomes pertaining to endometriosis are important and should be tracked to assess the efficacy and value of multidisciplinary and other endometriosis healthcare models.

Keywords: chronic care model; endometriosis; health services; multidisciplinary; multimodal; quality of life.

Figure 1

The chronic care model. Note: Reproduced with permission from Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract. 1998;1(1):2–4.

Figure 2

The University of California, San Diego Center for Endometriosis Research and Treatment model for multidisciplinary endometriosis care. The dashed line for community support group indicates that although this is an important component of the chronic care model, it is yet an unmet need in UC San Diego Center for Endometriosis Research and Treatment. Specialties with shorter arrows generally receive more frequent referrals than the ones with longer ones.

Figure 3

Relative frequency of referrals from the central gynecologist and patient interactions to other components of the UC San Diego Center for Endometriosis Research and Treatment. *As the central gynecologist is a reproductive endocrinologist, the surgeon referrals typically reflect those for hysterectomy and not laparoscopy.