| Study | Reason for Exclusion |
|---|---|
| American Academy of Family, Physicians, Information from your family doctor. Endometriosis: what you should know, American Family Physician, 74, 601–2, 2006 | Leaflet on endometriosis |
| Anonymous, Patient information. Endometriosis: what it is and how it is treated.[Original report in Cleve Clin J Med. 2002 Aug;69(8):647–53; PMID: 12184473], Cleveland Clinic Journal of Medicine, 69, 654, 2002 | Leaflet on endometriosis |
| Anonymous, Endometriosis resources, Nursing, 45, 68, 2015 | Tools for health care professionals to give/explain information on endometriosis to women |
| Aragao, L. C., Liberman, D., Guerra, C. G., Sessa, F. V., Rodrigues, M. A., Costa, M. F., Crispi, C. P., Fonseca, M. F., Quality of life and deep infiltrating endometriosis: Worries about epidemiological quantitative studies using short form 36 and endometriosis health profile 30, Journal of Minimally Invasive Gynecology, 1), S98-S99, 2012 | Conference abstract, the abstract refers to the problems of studies using SF36 and EHP30 tools |
| Ballweg, M. L., Campbell, P. F., Psychosocial aspects of teen endo, Journal of Pediatric & Adolescent Gynecology, 16, S13–5, 2003 | Information already in included studies |
| Ballweg, ML, Endometriosis: the patient’s perspective, Infertility and Reproductive Medicine Clinics of North America, 3, 747–761, 1992 | Information already included from other studies |
| Barlow, D., Today’s treatments: how do you choose?, International Journal of Gynaecology & Obstetrics, 64 Suppl 1, S15–21, 1999 | Narrative |
| Barlow, J. H., Wright, C. C., Turner, A. P., Bancroft, G. V., A 12-month follow-up study of self-management training for people with chronic disease: are changes maintained over time?, British Journal of Health Psychology, 10, 589–99, 2005 | Study did not fit the protocol criteria |
| Bauer, E., Widschwendter, P., Stuck, D., Gundelach, T., Wulff, C., Janni, W., Hancke, K., Endometriosis Health Profile scores and their association with surgical diagnosis in premenopausal women, Journal of Endometriosis, 5, S31-S32, 2013 | Conference abstract |
| Brandes, I., Cluster analysis of endometriosis patients in an outpatient education programme, Archives of Gynecology and Obstetrics, 282, S174, 2010 | Conference abstract refers to the development and implementation of an outpatient intervention |
| Brown, Kristina Schelbert, Dyspareunia due to endometriosis: A qualitative study of its effect on the couple relationship, Dissertation Abstracts International: Section B: The Sciences and Engineering, 68, 3387, 2007 | Themes covered in the study already in other included studies |
| Campbell, P. F., Relieving endometriosis pain: why is it so tough?, Obstetrics & Gynecology Clinics of North America, 30, 209–20, 2003 | No information on participants, narrative |
| Charnock, D., Shepperd, S., Needham, G., Gann, R., DISCERN: an instrument for judging the quality of written consumer health information on treatment choices, Journal of Epidemiology & Community Health, 53, 105–11, 1999 | Validation tool not specific to endometriosis |
| Christian, A., The relationship between women’s symptoms of endometriosis and self-esteem, Journal of obstetric, gynecologic, and neonatal nursing: JOGNN / NAACOG, 22, 370–376, 1993 | Interventions not of interest |
| Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., Raine-Fenning, N., The social and psychological impact of endometriosis on women’s lives: a critical narrative review, Human Reproduction Update, 19, 625–39, 2013 | Systematic review, individual studies checked for inclusion according to protocol |
| Culley, L., Nudson, N., Law, C., Denny, E., Mitchell, H., Baumgarten, M., Raine-Fenning, N., Pain management decisions amongst couples living with endometriosis, Journal of Endometriosis, 5, S21-S22, 2013 | Conference abstract |
| Dancet, E. A. F., Apers, S., Kremer, J. A. M., Nelen, W. L. D. M., Sermeus, W., D’Hooghe, T. M., The patient-centeredness of endometriosis care and targets for improvement: A systematic review, Gynecologic and obstetric investigation, 78, 69–80, 2014 | Systematic review, individual studies checked for inclusion according to protocol |
| Deal, L. S., Williams, V. S., DiBenedetti, D. B., Fehnel, S. E., Development and psychometric evaluation of the Endometriosis Treatment Satisfaction Questionnaire, Quality of Life Research, 19, 899–905, 2010 | Account of the development of a questionnaire |
| Denny, E., ‘You are one of the unlucky ones’: Delay in the diagnosis of endometriosis, Diversity in Health and Social Care, 1, 39–44, 2004 | No available full text |
| Denny, E., Khan, K. S., Systematic reviews of qualitative evidence: what are the experiences of women with endometriosis?, Journal of Obstetrics & Gynaecology, 26, 501–6, 2006 | Systematic review, individual studies checked for inclusion according to protocol |
| Denny, E., Mann, C. H., Endometriosis and the primary care consultation, European Journal of Obstetrics, Gynecology, & Reproductive Biology, 139, 111–5, 2008 | Themes in the study are covered by other included studies |
| Di Donato, N., Montanari, G., Benfenati, A., Leonardi, D., Bertoldo, V., Monti, G., Casadio, P., La Marca, A., Seracchioli, R., The impact of socioeconomic and anamnestic characteristics on quality of life and sexual function in women with endometriosis, Journal of Endometriosis and Pelvic Pain Disorders, 5, 159–165, 2013 | No study design |
| Duffy, O., Iversen, L., Hannaford, P.C., The menopause ‘It’s somewhere between a taboo and a joke’. A focus group study, Climacteric, 14, 497–505, 2011 | Topic out of scope |
| Dunselman, G., Vermeulen, N., Nap, A., The ESHRE’s endometriosis app, based on ESHRE’s 2013 guideline on the management of women with endometriosis, Human Reproduction, 29, i11-i12, 2014 | Not information and support, this is a conference abstract referring to an application developed by ESHRE |
| Facchin, F., Barbara, G., Saita, E., Mosconi, P., Roberto, A., Fedele, L., Vercellini, P., Impact of endometriosis on quality of life and mental health: pelvic pain makes the difference, Journal of Psychosomatic Obstetrics & Gynecology, 36, 135–41, 2015 | Study did not fit the protocol criteria |
| Fourquet, J., Gao, X., Zavala, D., Orengo, J. C., Abac, S., Ruiz, A., Laboy, J., Flores, I., Patients’ report on how endometriosis affects health, work, and daily life, Fertility & Sterility, 93, 2424–8, 2010 | Survey, not information and support |
| Fritzer, N., Haas, D., Oppelt, P., Renner, S., Hornung, D., Wolfler, M., Ulrich, U., Fischerlehner, G., Sillem, M., Hudelist, G., More than just bad sex: sexual dysfunction and distress in patients with endometriosis, European Journal of Obstetrics, Gynecology, & Reproductive Biology, 169, 392–6, 2013 | Topic not of interest |
| Gherghe, M., Robert, H., David, Y., Christopher, H., The predictive value of endometriosis related information on the internet, Gynecological Surgery, 10, S37, 2013 | Conference abstract, looks at the diagnostic value of websites to provide key information about endometriosis |
| Gould, D., Endometriosis, Nursing Standard, 17, 47–53; quiz 54–5, 2003 | Leaflet that provides information on endometriosis for nurses |
| Haas, D., Wurm, P., Schimetta, W., Schabetsberger, K., Shamiyeh, A., Oppelt, P., Binder, H., Endometriosis patients in the postmenopausal period: pre- and post-menopausal factors influencing postmenopausal health, BioMed Research International, 2014, 746705, 2014 | Population was postmenopausal women |
| Halpern, Vera, Lopez, Laureen M., Grimes, David A., Stockton, Laurie L., Gallo, Maria F., Strategies to improve adherence and acceptability of hormonal methods of contraception, Cochrane Database of Systematic Reviews, -, 2013 | The systematic review investigates the role of client-provider interventions for women’s adherence to hormonal treatment |
| Hirsh, K. W., Ladipo, O. A., Bhal, P. S., Shaw, R. W., The management of endometriosis: a survey of patients’ aspirations, Journal of Obstetrics & Gynaecology, 21, 500–3, 2001 | Study focuses on the patients aspiration about a specialist endometriosis clinic |
| Hudson, N., Culley, L., Law, C., Denny, E., Mitchell, H., Baumgarten, M., Raine-Fenning, N., Improving the well being of couples living with endometriosis, Human Reproduction, 28, i281, 2013 | Conference abstract, theme covered by other included studies |
| Hudson, N., Culley, L., Mitchell, H., Law, C., Denny, E., Raine-Fenning, N., Men living with endometriosis: Perceptions and experiences of male partners of women with the condition, Human Reproduction, 30, i35, 2015 | Information from this study has been included from another conference abstract |
| Jacox, Cynthia Marlaine, Coping styles and psychological distress in women with endometriosis, Dissertation Abstracts International: Section B: The Sciences and Engineering, 56, 6394, 1996 | Research abstract, original paper not found |
| Jones, K. P., Emotional aspects of endometriosis: a physician’s perspective, Clinical Obstetrics & Gynecology, 31, 874–82, 1988 | Narrative |
| Karavadra, B., Simpson, P., Mullins, E., Prosser-Snelling, E., Morris, E., A mixed qualitative and quantitative analysis on the impact of endometriosis on women in the UK; a silent disease?, BJOG: An International Journal of Obstetrics and Gynaecology, 123, 56, 2016 | Conference abstract |
| Kennedy, S., What is important to the patient with endometriosis? British Journal of Clinical Practice. Supplement, 72, 8–10; discussion 11–3, 1991 | No available full text |
| Kilaru, A. S., Paciotti, B., Ha, Y., Ranard, B., Griffis, H., Merchant, R., What do patients say about emergency departments in online reviews?, Annals of Emergency Medicine, 1), S135, 2014 | Topic not of interest |
| Kundu, S., Wildgrube, J., Schippert, C., Hillemanns, P., Brandes, I., Supporting and inhibiting factors when coping with endometriosis from the patients’ perspective, Geburtshilfe und Frauenheilkunde, 75, 462–469, 2015 | No available full text |
| Manderson, L., Warren, N., Markovic, M., Circuit breaking: pathways of treatment seeking for women with endometriosis in Australia, Qualitative Health Research, 18, 522–34, 2008 | Themes in study covered by other included studies |
| Pope, C. J., Sharma, V., Sharma, S., Mazmanian, D., A Systematic Review of the Association Between Psychiatric Disturbances and Endometriosis, Journal of Obstetrics & Gynaecology Canada: JOGC, 37, 1006–15, 2015 | Study did not fit the protocol criteria |
| Quilliam, S., Endometriosis: the bloggers’ tales, Journal of Family Planning & Reproductive Health Care, 40, 142–4, 2014 | Narrative review |
| Roman, H., Loisel, C., Resch, B., Tuech, J. J., Hochain, P., Leroi, A. M., Marpeau, L., Delayed functional outcomes associated with surgical management of deep rectovaginal endometriosis with rectal involvement: giving patients an informed choice, Human Reproduction, 25, 890–9, 2010 | Outcomes not in protocol |
| Sahin, S., Beji, N. K., Assessment of quality of life of women with endometriosis, Human Reproduction, 27, 2012 | Validation of EHP30 questionnaire into Turkish to assess QOL of women with endometriosis |
| Schenken, R. S., Delayed diagnosis of endometriosis, Fertility and sterility, 86, 1305–1306, 2006 | Commentary on Ballard 2006 study |
| Sepulcri Rde, P., do Amaral, V. F., Depressive symptoms, anxiety, and quality of life in women with pelvic endometriosis, European Journal of Obstetrics, Gynecology, & Reproductive Biology, 142, 53–6, 2009 | The study did not fit the protocol (no interventions) |
| Seyhan, A., Ata, B., Uncu, G., The Impact of Endometriosis and Its Treatment on Ovarian Reserve, Seminars in Reproductive Medicine, 33, 422–8, 2015 | Study did not fit the protocol criteria |
| Shadbolt, N. A., Parker, M. A., Orthia, L. A., Communicating endometriosis with young women to decrease diagnosis time, Health Promotion Journal of Australia, 24, 151–4, 2013 | Survey looked at women’s knowledge of endometriosis rather than what they would find useful in terms of information and support |
| Shah, D. K., Moravek, M. B., Vahratian, A., Dalton, V. K., Lebovic, D. I., Public perceptions of endometriosis: perspectives from both genders, Acta Obstetricia et Gynecologica Scandinavica, 89, 646–50, 2010 | Survey about endometriosis, not qualitative format |
| Soliman, A. M., Gooch, K. L., Winkel, C. A., Quality of life (QOL) in endometriosis patients and its correlation with symptomatic burden: A cross sectional survey among us women, Endocrine Reviews. Conference: 96th Annual Meeting and Expo of the Endocrine Society, ENDO, 35, 2014 | Conference abstract |
| Suchard, M. A., Hadfield, R., Elliott, T., Kennedy, S., Beyond providing information: the Internet as a research tool in reproductive medicine, Human Reproduction, 13, 6–7, 1998 | Response of women to a website developed at Oxford University |
| Toye, F., Seers, K., Barker, K., A meta-ethnography of patients’ experiences of chronic pelvic pain: struggling to construct chronic pelvic pain as ‘real’, Journal of Advanced Nursing, 70, 2713–27, 2014 | Systematic review, individual studies already checked for inclusion according to protocol |
| Tripoli, T. M., Sato, H., Sartori, M. G., de Araujo, F. F., Girao, M. J., Schor, E., Evaluation of quality of life and sexual satisfaction in women suffering from chronic pelvic pain with or without endometriosis, Journal of Sexual Medicine, 8, 497–503, 2011 | Study uses a questionnaire to look at quality of life and sexual satisfaction in women with endometriosis, not information and support |
| Turnbull, H., Mukhopadhyay, S., Morris, E., The effect of endometriosis on quality of life in patients with a diagnosis in their younger reproductive years, International Journal of Gynecology and Obstetrics, 107, S631, 2009 | This was a response of women to a website developed by Oxford University |
| van de Burgt, T. J., Kluivers, K. B., Hendriks, J. C., Responsiveness of the Dutch Endometriosis Health Profile-30 (EHP-30) questionnaire, European Journal of Obstetrics, Gynecology, & Reproductive Biology, 168, 92–4, 2013 | Background information |
| Wang, C. Y., Coping with endometriosis, Lancet, 364, 1800, 2004 | Personal account of a woman with endometriosis |
| Weinstein, K., The emotional aspects of endometriosis: what the patient expects from her doctor, Clinical Obstetrics & Gynecology, 31, 866–73, 1988 | Narrative review |
| Whitney, M. L., Importance of lay organizations for coping with endometriosis, Journal of Reproductive Medicine, 43, 331–4, 1998 | Information already covered in included studies |
| Wingfield, M. B., Wood, C., Henderson, L. S., Wood, R. M., Treatment of endometriosis involving a self-help group positively affects patients’ perception of care, Journal of Psychosomatic Obstetrics & Gynecology, 18, 255–8, 1997 | Target population not endometriosis |
| Wright, C. C., Barlow, J. H., Turner, A. P., Bancroft, G. V., Self-management training for people with chronic disease: an exploratory study, British Journal of Health Psychology, 8, 465–76, 2003 | Only 10% of participants had endometriosis |
| Young-Lewis, L., Silverman, J., Endometriosis. Supportive care is essential, Advance for Nurse Practitioners, 9, 24–6, 29–30, 2001 | No available full text |
| Yuzpe, A. A., Oral contraception: Trends over time, Journal of Reproductive Medicine for the Obstetrician and Gynecologist, 47, 967–973, 2002 | Narrative review, not qualitative study |
From: Appendix H, Excluded studies
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