EndoNeeds: Investigating the unmet physical, psychological and social needs of Australian women with endometriosis.
Endometriosis is a disease that can affect every facet of a woman’s life, interfering with her ability to work, study, care for family and enjoy a normal social life. Thus, interventions designed to reduce the impact of endometriosis must take into account the ‘whole patient’, rather than focusing only on medical issues. For this reason, the biopsychosocial model of care (which considers the biological, psychological and social aspects of health) is particularly relevant, and should be used for, the care of women with endometriosis.
As health care services endeavour to become more patient-centred, the use of ‘patient-reported outcome measures’ (PROMs) has gained importance. PROMs can be used to measure a patient’s function, symptoms and quality of life, and a number of endometriosis-specific PROMs have been developed. However, most of these focus on physical symptoms and quality of life and do not address aspects of care that patients require or desire in order to obtain optimal well-being – their ‘unmet needs’. A type of PROM that has been used extensively in cancer care to capture what
patients feel they need to improve their well-being is the ‘unmet needs’ survey. A thorough review of the existing evidence reveals that only one unmet needs survey has been developed for women with endometriosis, and this focused on the informational needs of the women, in addition to exploring their experiences of the disease. In addition, it is unclear whether the survey instrument was subject to psychometric validation. What is needed is a systematic examination of unmet needs, which can be used to improve clinical care and ultimately the woman’s experience of living with endometriosis.
Our project aims to combine the concepts of the biopsychosocial model of care and patient-centred care by developing and administering a survey that investigates the physical, psychological and social needs of Australian women with endometriosis, and to what extent those needs are being met.
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