Table 2.

Summary of included studies

Author(s), Year Country	Aim	Study design, method, data source(s)	Sample Description Response Rate or Completion Rate (where applicable)	Self-Management Elements	Quality score
Randomised Controlled Trials
Mira et al. 2015 Brazil [17]	Evaluate the effectiveness of Transcutaneous Electrical Nerve Stimulation (TENS) as a complementary treatment of chronic pelvic pain and/or deep dyspareunia among women with deep endometriosis and evaluate the effect on quality of life.	Design: Non-blinded RCT Method: Individuals randomised into two intervention groups (acupuncture-like TENS and self-applied TENS). No control group. Participants recruited through Women’s Hospital of the University of Campinas. Data source: VAS pain, EHP 30 (core and additional components) and study specific questions (sexual intercourse pain)	Sample: 22 women with deep endometriosis, experience pelvic pain &/or deep dyspareunia despite prescribed hormonal treatment (11 in each treatment group) Characteristics: Mean age 36.0 ± 7.1 Average age of diagnosis: 29.1 ± 7.8 Educated, employed, living with a partner Completion rate: 100% (no loss to follow up)	Self-care tasks	0.85
Gonçalves et al. 2017 Brazil [18] ■	The aim of this study was to compare chronic pelvic pain, menstrual patterns, and quality of life (QoL) between two groups of women with endometriosis: those who were assigned to an 8-week yoga intervention or to the usual standard of care.	Design: Mixed methods study including non-blinded RCT and interviews Method: Individuals randomised into two groups a yoga and control group (usual care). Participants recruited through endometriosis and physical therapy outpatient clinics of the University of Campinas Medical School. Data source: EHP30 (core and additional components), daily pain pattern (VAS) and study specific questions (menstrual pattern) Interview data reported in [34]	Sample: 40 women with endometriosis-associated chronic pelvic pain. 28 in the yoga group and 12 in control. Characteristics: Mean age 34.88 ± 6.7 Over 60% married/cohabitating 1/3 completed higher education 60% were employed Completion rate: 57% completed 8-week yoga program	Self-care tasks	0.81
Surveys
Whitney 1998 United States [24]	To better understand the social support experiences of women with endometriosis	Design: Cross-sectional survey Method: Volunteers from an online endometriosis group were sent the survey. Open-ended questions – thematically analysed. Further details of the method not provided. Data source: Study specific questions (social support experience of women among spouse/partner, friends/extended family, others with endometriosis and health care providers)	Sample: 46 women with endometriosis from an online support group Characteristics: Sample described as predominantly from the ‘US, white, in their 30’s, well-educated and affluent’ (no further summary data provided). Response rate: 78% returned survey (46/59)	Patient-provider relationship, information seeking/knowledge, resource utilisation	0.44
Ballweg 2004 United States [19]	No aim stated. Appeared to be to compare registry data across two time periods.	Design: Cross-sectional survey – two time periods Method: Mailed out surveys to North American members of the US Endometriosis Society. Further details not provided. Data source: Details of questions not reported.	Sample: Members of US Endometriosis Society • Registry 1: 3020 participants (1980–1986) • Registry 2: 4000 participants (1998) Characteristics: Not reported. Response rate: Not reported.	Self-care tasks/behaviour change	0.30
Music 2005 United Kingdom [25]	No aim stated. Appeared to be to present the results of an evaluation of the UK Endometriosis Self-Management Course	Design: Not reported. Appears to be a cross-sectional survey evaluating a program. Method: Not reported. Appears to be 6 month follow up survey after a chronic disease self-management program conducted at Endometriosis UK. Data source: Details of questions not reported.	Sample: Not reported. Appears to be attendees of the program conducted by UK Endometriosis Association. Characteristics: Not reported. Response rate: Not reported.	Active participation, Self-care tasks Behaviour change Self-efficacy	0.17
Bodén et al. 2013 Sweden [20]	To investigate what type and level of support women diagnosed with endometriosis received from the school medical network and the nurses during their secondary (13–15 years old) and upper secondary school years (16–19 years old) and how it affected their quality of life.	Design: Cross-sectional online survey Method: Recruited participants through the Swedish Endometriosis Association. The association sent a letter with instructions to complete the survey online. The survey consisted of closed and open-ended questions. Data source: Study specific questions (background, history, and questions designed to get an account of participant experience). Specific details of the questions not provided in the paper.	Sample: 23 women finished schooling in last 10 years, who experienced symptoms during school years, later diagnosed with endometriosis (eligible if aged 18–26 years) Characteristics: Born between 1983 and 1990 Mean age of diagnosis 21 years (range 16–26 years) Response rate: 100% of those that were eligible.	Patient-provider relationship Information seeking/knowledge	0.56
Kundu et al. 2015 Germany [21]	To identify supporting and inhibiting factors on disease management to develop new support ideas.	Design: Cross-sectional survey Method: Participants recruited through newspaper, internet adverts and gynaecology clinics. Survey sent to participants prior to a training program for endometriosis. Reports results from open-ended questions that supplemented the training evaluation form. Data source: Study specific, open-ended questions about ‘coping’, what is lacking with managing the disorder and what could be improved.	Sample: 135 women with endometriosis, fluent in German Characteristics: Mean age 38.4 years (SD ± 8.0 years) (predominantly 31–45 age group) 68.9% married or cohabiting 61.5% university or technical college entrance Response rate: not reported.	Patient-provider relationship	0.75
Roos-Eysbouts et al. 2015 Netherlands [22]	To give an insight into characteristics of members of the Dutch Endometriosis Society members and evaluate their needs and expectations from the endometriosis society.	Design: Cross-sectional online survey Method: Survey emailed to all Dutch Endometriosis Society members that had an email address listed with the society. Survey featured multiple choice questions. Data source: Survey with study specific questions. 63 multiple choice questions relating to demographic characteristics, diagnosis, treatment, the impact of endometriosis and evaluation of patients’ needs and expectations from the endometriosis society.	Sample: 571 Dutch Endometriosis Society members Characteristics: The majority were in a ‘relationship, under 45 years of age, employed, and had completed tertiary education’. Response rate: 51% (571/1111)	Self-care/Behaviour change Information seeking/knowledge	0.78
Shoebotham &Coulson 2016 United Kingdom [23]	To examine the presence of therapeutic affordances as perceived by women who use endometriosis online support groups	Design: Cross-sectional online survey Method: Link to survey posted on three online endometriosis support groups (after group moderator approval). Data source: Study specific questions including demographic characteristics, use of online support groups, support group motives, experiences and coping. Paper reports results from a thematic analysis of open-ended questions.	Sample: 69 women in an online support group Characteristics: Mean age of 34.2 (range 19–50 years) Majority residents of UK (65.2%) or the US (21.7%) Response rate: not reported, no indication of total members of the groups.	Information seeking/knowledge	0.69
Qualitative studies – involving focus groups and interviews
Cox et al. 2003 Australia [28]◆	Study: To identify women’s needs for information related to laparoscopy for endometriosis. Paper: the experience of health care and the use of complementary therapies to manage symptoms.	Design: Mixed methods (cross-sectional survey and focus groups) – paper reports findings from focus group Method: Women were recruited from Victorian Endometriosis Association and Epworth Hospital database. Focus group participants were recruited from respondents that completed the survey (survey n = 670). Three groups were conducted face-to-face and two were conducted over the telephone. Data source: Subject areas or interview guide not provided. Results relate to the struggle of living with the disease, becoming assertive and use of complementary/alternative therapies.	Sample: 61 women with endometriosis Characteristics: predominantly Victorian city sample Age range 20–64 (provided in categories) Largest age group 30–34 years	Active participation Informed decisions Monitoring symptoms Patient provider relationship	0.45
Cox et al. 2003 Australia [27]◆	To identify the information needs of women facing laparoscopy for endometriosis	Design and method: Refer to [28] Data source: Women invited to discuss: What information they would like to receive or contribute about endometriosis relating to: • Nature of disease • Experience of living with endometriosis • Experience with diagnosis and treatment	Sample and characteristics: Refer to [28]	Active participation Informed decisions Monitoring symptoms Patient provider relationship	0.75
Jones et al. 2004 United Kingdom [35]	To identify and understand, from the patient’s perspective, the areas of HRQoL that are affected by endometriosis and to address the benefits of using a qualitative methodology for item generation in the development of disease-specific health status questionnaires.	Design: Semi-structured interviews Method: Recruited through an outpatient clinic at the Women’s Centre, John Radcliffe Hospital, Oxford. Interviews conducted in a research facility at the hospital. Data source: Women were asked: ‘Please feel free to say anything about what your life has been like with the condition’. Prompts relating to QOL were derived from the literature.	Sample: 24 women diagnosed with endometriosis Characteristics: Mean age 32.5 (Range 21.5–44 years) 12 married, 3 separated, 2 cohabiting, 4 long-term relationship (not living together), 3 single. 14 were nulliparous (6 undergoing IVF)	Self-care/Behaviour change Monitoring symptoms	0.95
Denny 2004 United Kingdom [29] ❖	To explore the lives of women with endometriosis	Design: In-depth interviews Method: Recruited through self-help groups, gynaecology department at a local hospital and snowballing. 20 interviews conducted primarily in women’s homes Data Source: Story-telling approach – e.g. first experience of symptoms associated with endometriosis. Follow up questions on pain, social relationships, working life, sickness relationship with health professionals.	Sample: 20 women diagnosed with endometriosis Characteristics: Mean age 33 years (Range 20–47 years) Majority ‘middle class, white British’	Information seeking Knowledge Patient-provider relationship	0.75
Denny 2004 United Kingdom [30] ❖	To explore women’s experience of living with endometriosis.	Design, Method, Data Sources: Refer to [29]. At the time of publication 15 interviews had been conducted.	Sample: 15 women diagnosed with endometriosis Characteristics: Demographic information not provided in this paper	Self-care activities	0.80
Strzempko Butt & Chesla 2007 United States [26]	To investigate responses in the couple’s relationship to living with chronic pelvic pain (CPP) from endometriosis. Takes into account the socio-cultural context.	Design: In-depth interviews Method: Recruited through clinics (public and private) and endometriosis groups. Included individual interviews with women, partners and couple interviews. Data source: Interviews started with the question ‘Please tell me about something that has happened recently in relation to your endometriosis that was difficult for you or your partner. Please just tell me the story as it happened’. Additional prompts around illness understanding, symptom experience, relational responses to CPP.	Sample: 13 women with endometriosis that experience chronic pelvic pain for at least 6 months and 13 male partners Characteristics: lived together mean 6 years (range 1 to 23) mainly childless (two couples had 1 child) Mean age women 34 (range 23 to 48 years) male partners mean age 38 (range 24 to 50 years) mainly employed (92% women, 84% men) health insurance (all women, 85% of partners) 60% were European American almost 50% had a household income of US $100,000 or above	Self-care activities	0.85
Denny & Mann 2007 United Kingdom [32] ●	To understand the impact of dyspareunia on women’s lives	Design: Semi-structured interviews Method: recruited from an endometriosis outpatient clinic. Interviews conducted in an acceptable place for women. Adopted a storytelling approach. Data source: Invited to ‘tell their story of living with endometriosis from the time they first experienced symptoms’. 14 spontaneously discussed painful intercourse – follow up question for those that didn’t.	Sample: 30 women diagnosed with endometriosis Characteristics: Mean age 31 (range 19–44 years) Majority ‘White British’, from ‘social classes 1–3’ married or cohabiting (20/30) all heterosexual women with children (11 + 2 pregnant)	Self-care activities	0.80
Manderson et al. 2008 Australia [36] ○	To explore whether and how women’s experience of gynaecological or reproductive health problems or conditions impacted their gendered, social and personal identities.	Design: In-depth interview Method: Substudy within a larger study (paper presents information from women with endometriosis). Recruited through community newspapers, noticeboards, and snowball sampling. Interviews conducted in place of women’s choice (mostly own home) Data Source: Details of questions not provided. Results related to pathways of treatment-seeking among women with endometriosis.	Sample: 40 women with endometriosis, living in Victoria Characteristics: Mean age 45.5 (range 20 to 78 years) 88% Australian born Range of social and economic backgrounds, lived in geographically diverse areas 30% not in paid employment, 50% of women were in managerial or professional occupations	Self-care activtities	0.75
Markovic et al. 2008 Australia [37]○	To enrich understanding of the relationship between the patient’s socio-demographic background and health-related phenomena	Design, method: Refer to [36] At the time of publication 30 interviews had been conducted. Data source: Details of questions not provided. Results relate to illness narratives of endurance and contest.	Sample: 30 women with endometriosis, living in Victoria Characteristics: 25 Australian born Mean age 43.9 years (range 20–78) Most resided outside of metropolitan areas 2/3 married or defacto relationships	Active participation, self-care/Behaviour change Informed decisions Monitoring symptoms Patient provider -relationship Information seeking/knowledge	0.75
Denny & Mann 2008 United Kingdom [33] ●	To explore the experience of women with endometriosis in the primary care setting.	Design: Semi-structured interviews Method: Recruited through an endometriosis clinic at a women’s hospital. Interviews conducted in own home or clinic. Data source: Women were invited ‘to tell their story from the first experience of symptoms’. 17 spontaneously mentioned relationships with GPs – additional prompts for those that didn’t.	Sample: 30 women with endometriosis Characteristics: mean age 31 (range 19 to 44) 27 classed as ‘socio-economic class 1–3’ 27 were ‘white British’	Patient – provider relationship	0.75
Seear 2009 Australia [40] ⟡	To explore the experiences of Australian women living with endometriosis – focus on becoming expert patients.	Design: Semi-structured interviews Method: Recruited through snowball sampling and newsletter of support group. ‘Expert patients’ was not a focus of study but emerged as a key theme. Data source: Questions explored: diagnosis, treatment, the doctor-patient relationship, self-help, causation and illness experiences.	Sample: 20 women with endometriosis Characteristics: Mean age 34 years (range 24–55) Majority married or in a relationship, mainly Anglo-Celtic and tertiary educated 10/20 members current or previous members of a support group	Self-care tasks Patient – provider relationship Information seeking/knowledge	0.60
Seear 2009 Australia [41] ⟡	To explore the experiences of 20 Australian women living with endometriosis – focus on menstrual etiquette/stigmatisation	Design, method, data source: Refer to [40]	Sample and characteristics: Refer to [40] Mean age of diagnosis 27 years	Self-care/Behaviour change Patient-provider relationship	0.55
Seear 2009 Australia [42] ⟡	To examine non-compliance with health advice among women with endometriosis.	Design, method, data source: Refer to [40] Non-compliance was not a focus of the study but raised spontaneously by some of the participants	Sample and characteristics: Refer to [40]	Active participation Self-care/Behaviour change Informed decisions Patient-provider relationship	0.55
Denny 2009 United Kingdom [31]●	To explore women’s experience of living with endometriosis in a prospective study over a 1 year period.	Design: Repeated semi-structured interviews Method: Recruited from an endometriosis clinic at a women’s hospital. Interviews conducted at a place chosen by the participant. Interviews conducted upon recruitment and 1 year after. Volunteer sample kept a diary of experiences of endometriosis over one menstrual cycle. Data source: Interview started with ‘tell me about living with endometriosis from the time you first experienced pain’. Follow up questions on the impact on life, relationship.	Sample: 30 women recruited – 27 were interviewed at 1 year 19 women were asked to keep a diary – only seven completed and returned it Characteristics: 20 women were married or cohabitating 27 described ethnicity as ‘white British’, Response rate: 90% (27/30 completed interview at 1 year)	Self-care/Behaviour change Patient-provider relationship	0.90
Moradi et al. 2014 Australia [38]	To explore women’s experiences of the impact of endometriosis and whether there are differences across three age groups.	Design: Semi-structured focus groups Method: Recruited from an endometriosis clinic at a Canberra public teaching hospital and GP in community and information evening. Conducted 10 focus groups with 3 to 4 participants per group. Groups were split into age groups: Group 1 (16–24 years), Group 2 (25–34 years) and Group 3 (35 years and above). Data source: interview guide developed with two main questions ‘How are women’s experiences of living with endometriosis?’ & ‘How does endometriosis affect women’s lives?’	Sample: 35 women with endometriosis Characteristics: mean age was 31.1 ± 10.4 years (range 17–53). Most (30 out of 35) were Australian born, Most were married or had partners	Self-care/Behaviour change Patient-provider relationship	0.85
Gonçalves 2016 Brazil [34] ■	This study sought to understand the meanings that women with pain-associated endometriosis attribute to an 8-week yoga program regarding their bodily experiences with the practice and their perceived potential benefits	Design: Mixed methods (RCT and semi-structured interviews) Method: Focus of paper is on interviews. Purposive sampling – volunteers who completed the 8-week yoga program from RCT. Data source: Interview guide – endometriosis symptoms and yoga practice	Sample: 15 women who had completed the 8-week yoga program Characteristics: aged 24–49  years, more than half were married, more than half had completed high school or higher education. More than half were working during the study.	Self-care	0.70
Roomaney & Kagee 2016 South Africa [39]	To explore how patients in a resource-constrained setting coped with living with endometriosis.	Design: Semi-structured interviews Method: Participants recruited from an obstetrics & gynaecology department at a Cape Town hospital. Interviews conducted at the researcher’s office, participants’ homes or location selected by participants. Interviews conducted English or Afrikaans (participant preference). Data source: Interview guide started with ‘can you tell me about your experience with endometriosis’ – 13 prompts to explore this experience.	Sample: 16 women diagnosed with endometriosis Characteristics: Mean age 33 years (range 23–42 years). Eight were married, 3 divorced, 5 single Majority employed 9 were employed full-time, 3 were employed part-time, 3 were unemployed and 1 was a student.	Self-care/Behaviour change Information seeking/Knowledge	0.85
Young et al. 2016 Australia [43]	To increase understanding of women’s experiences of endometriosis from their perspective.	Design: In-depth interviews Method: Recruited through women’s health magazine and event, queer-friendly organisations & cultural services. Interviews conducted in person (home/research facility) or via telephone Data source: Interview guide started with ‘Please tell me about your experience of endometriosis. You can start from whatever point you like and include whatever you find necessary’ (additional prompts explored experience)	Sample: 26 women diagnosed with endometriosis in Victoria Characteristics: Majority aged in 30’s, born in Australia, completed an undergraduate degree live with partner and identified as heterosexual.	Patient-provider relationship	0.90

■♦◆❖●○⟡ Symbols indicate data generated by the same study. TENS Transcutaneous electrical nerve stimulation, VAS Visual Analogue Scale, EHP30 Endometriosis health profile, RCT randomised controlled trial, CPP chronic pelvic pain, f2f face to face, self-management elements (Table 1)