Consumer use, experience and satisfaction of care coordination: Conex Study - the protocol.

Abstract

Internationally, multidisciplinary team care for people with endometriosis is advocated for, and promisingly, recent ESHRE guidelines recommend shared decision-making and multidisciplinary care for endometriosis-associated pain. In the UK, a nurse-led pathway for patients with endometriosis and pain was proposed in the British Journal of Pain. “The initial lengthy [nurse] consultation starts the process of moving the patient from thinking about endometriosis associated pain syndrome as being a lesion that can be removed to regarding it as a chronic disease process that is recognised and managed, and shifts the patient’s orientation to the problem of ongoing pain”. There is an unmet need for research into multidisciplinary care models for people with endometriosis, in particular, patient-centred evidence is lacking in Australia. Support for nurse-led chronic pain clinics exist, yet evidence is limited for endometriosis. We recently established a nurse-led model of care (NLMOC), which has provided and coordinated personalised care plans for over 620 individuals with endometriosis. Anecdotally, our centre receives positive feedback about the NLMOC. We have designed this protocol to objectively measure the patient experience of the NLMOC for endometriosis care.