Self-management in condition-specific health: a systematic review of the evidence among women diagnosed with endometriosis

Abstract

Background Endometriosis is a chronic condition, requiring long-term care as there is no cure. Self-management is the active participation of a person in managing their chronic condition and has been associated with improved knowledge, self-efficacy, performance of self-management tasks and some aspects of health status in interventions for other chronic diseases. The aim was to review the available evidence about the impact of self-management on condition-specific health among women with endometriosis. Methods The Medline, PsycINFO, CinahlPlus, Web of Science and Scopus databases were searched and PRISMA guidelines were followed. Search terms were entered both as keywords and mapped to individual database subject headings. Inclusion criteria were: papers that reported investigations of any approach to self-management; among women (at least 18 years) diagnosed with endometriosis and published in English in a peer-reviewed journal. All study designs using quantitative or qualitative methods were eligible for inclusion. Two reviewers independently examined the quality of studies using standard criteria. The systematic review was registered with Prospero (CRD42016042028). Results A total of 1164 records were identified (after duplicates were removed), and 27 papers, reporting 19 studies met inclusion criteria. Two papers reported findings from RCTs of complementary therapies, seven reported survey data and 18 qualitative studies. No study had investigated all elements of self-management. Women with endometriosis utilise a range of self-care activities and complementary therapies to assist them to manage their symptoms. Women reported both positive and negative experiences with health care providers. Conclusions There is some evidence that self-care activities, complementary therapies and positive patient–healthcare provider relationships are important components of self-management for endometriosis. Self-management among women with endometriosis is an emerging field of research and no investigations of all elements of self-management, informed by a comprehensive definition and theoretical framework are available. Health and wellbeing outcomes and barriers and facilitators to self-management for women with endometriosis require further investigation. Electronic supplementary material The online version of this article (10.1186/s12905-019-0774-6) contains supplementary material, which is available to authorized users.

Experiences of health after dietary changes in endometriosis: a qualitative interview study

“…No scientific definition of this has been found, and so we simply defined dietary change as a change from one’s prior diet. Another limitation is also the lack of definition of self-management among persons with endometriosis, as revealed by a systematic review of all the components of self-management in relation to endometriosis 11. One study defined it as ‘steps taken by the participants to alleviate the symptoms of endometriosis’, but this definition is more consistent with the definition of ‘self-care’ than that of self-management 15…”

“…However traditional treatment does not always have the desired effect on symptoms and health 7. Persons with endometriosis uses a range of self-care activities and complementary therapies in addition to traditional treatment to assist them in managing their symptoms 4 11 12. These therapies include supplements, yoga/meditation, herbal medicines, transcutaneous electrical nerve stimulation, dietary changes, exercise, osteopathy, massage, acupuncture, herbalism and Chinese medicine 4 13.…”

The effects of nutrients on symptoms in women with endometriosis: a systematic review

“…Because of the limited amount of success of treatment and because of the chronic character of endometriosis, many women feel the need to be in control of this disease themselves and they are looking for tools to do so. Empowering patients suffering from chronic diseases, including endometriosis, by giving them opportunities to positively influence their pain could result in decreased feelings of helplessness and increased quality of life (O'Hara et al, 2019). Self-management activities may be important empowering tools.…”

“A little monster inside me that comes out now and again”: endometriosis and pain in Austria

“…This interesting field of research has not received any attention in Austria so far, even though general practitioners are the first point of contact in health services. A literature review on these issues mentions the need for medical staff to have knowledge, empathy, and good communications strategies to be able to support suffering women in the best possible way and maintain good physician-patient relationships 47 . As early as 2015, women interviewed as part of a qualitative study in Styria (Austria) expressed their desire for improved communication with physicians 48 .…”