Women's experience of premature ovarian insufficiency (POI) diagnosis: update on actual practices and women's follow-up (EMPOIHER Study).

Λεπτομέρειες βιβλιογραφικής εγγραφής
Τίτλος: Women's experience of premature ovarian insufficiency (POI) diagnosis: update on actual practices and women's follow-up (EMPOIHER Study).
Συγγραφείς: Aubin M; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Gosset A; Department of Menopause, Toulouse University Hospital, Bordeaux, France., Grouthier V; Department of Endocrinology, Diabetes and Nutrition, Bordeaux University Hospital, Bordeaux, France.; Biology of Cardiovascular Diseases, Univ. Bordeaux, Pessac, France., Lecomte A; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Begon E; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Carrière J; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Chansel-Debordeaux L; Department of Reproductive Biology, Bordeaux University Hospital, Bordeaux, France.; BoRdeaux Institute in Oncology (BRIC)-BioGo Team, Univ. Bordeaux, Bordeaux, France., Depuydt C; Department of Reproductive Biology, Bordeaux University Hospital, Bordeaux, France.; BoRdeaux Institute in Oncology (BRIC)-BioGo Team, Univ. Bordeaux, Bordeaux, France., Frantz S; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Laloux G; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Lambert M; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Hocké C; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France., Trémollieres F; Department of Menopause, Toulouse University Hospital, Bordeaux, France., Bernard V; Department of Gynaecology and Reproductive Medicine, Bordeaux University Hospital, Bordeaux, France.; BoRdeaux Institute in Oncology (BRIC)-BioGo Team, Univ. Bordeaux, Bordeaux, France.
Πηγή: Menopause (New York, N.Y.) [Menopause] 2026 Jan 01; Vol. 33 (1), pp. 12-19. Date of Electronic Publication: 2026 Jan 01.
Τύπος έκδοσης: Journal Article
Γλώσσα: English
Στοιχεία περιοδικού: Publisher: Lippincott-Raven Publishers Country of Publication: United States NLM ID: 9433353 Publication Model: Electronic Cited Medium: Internet ISSN: 1530-0374 (Electronic) Linking ISSN: 10723714 NLM ISO Abbreviation: Menopause Subsets: MEDLINE
Imprint Name(s): Publication: Hagerstown, MD : Lippincott-Raven Publishers
Original Publication: New York, NY : Raven Press, c1994-
Ιατρικοί όροι (MeSH): Primary Ovarian Insufficiency*/psychology , Primary Ovarian Insufficiency*/diagnosis , Patient Satisfaction*, Humans ; Female ; Adult ; Middle Aged ; France ; Follow-Up Studies ; Disclosure
Περίληψη: Objective: Although premature ovarian insufficiency (POI) diagnosis can be devastating, few studies focused on women's experiences of the disclosure. The objective of EMPOIHER study was to evaluate women's satisfaction with POI disclosure and the association with subsequent adherence to the treatment plan and medical follow-up.
Methods: We studied a cohort of 101 women diagnosed with spontaneous POI who attended two French University Hospitals between 2017 and 2024. Standardized interviews collected gynaecologic history, experience of POI diagnosis, etiological and comorbidities assessment, POI follow-up and menopause hormone therapy (MHT) use. Women's satisfaction with POI disclosure was evaluated using a five-item scale assessing the health care provider's emotional responsiveness, clarity of communication, amount of information provided, opportunity for questions and relevance of discussed topics to the women's concerns.
Results: Sixty-four percent of participants declared they were globally satisfied or very satisfied with the way they were informed of their POI diagnosis. However, 70% sought more information using the internet or asked for the opinion of another practitioner. Surprisingly, psychological support was offered to only 19.8% of women. Solely 63.4% of participants benefited from MHT at inclusion. No association was found between women's satisfaction regarding POI disclosure and their adherence to follow-up and MHT.
Conclusions: While participants expressed general satisfaction with the communication of their POI diagnosis, there is room for improvement in clinicians' communication skills regarding providing information and empathy. Furthermore, women should be offered psychological support following POI diagnosis. Our findings emphasise the need for guidelines concerning the POI disclosure process. In this study, no association was found between women's satisfaction with POI announcement and their adherence to MHT and gynecologic follow-up.
(Copyright © 2025 by The Menopause Society.)
Competing Interests: Financial disclosure/conflicts of interest: E.B. has a current financial relationship with Gedeon Richter. The other authors have nothing to disclose.
References: Mishra GD, Pandeya N, Dobson AJ, et al. Early menarche, nulliparity and the risk for premature and early natural menopause. Hum Reprod Oxf Engl 2017;32:679-686. doi:10.1093/humrep/dew350. (PMID: 10.1093/humrep/dew350)
Lagergren K, Hammar M, Nedstrand E, Bladh M, Sydsjö G. The prevalence of primary ovarian insufficiency in Sweden: a national register study. BMC Womens Health 2018;18:175. doi:10.1186/s12905-018-0665-2. (PMID: 10.1186/s12905-018-0665-2)
Vogt EC, Real FG, Husebye ES, et al. Premature menopause and autoimmune primary ovarian insufficiency in two international multi-center cohorts. Endocr Connect 2022;11:e220024. doi:10.1530/EC-22-0024. (PMID: 10.1530/EC-22-0024)
Li M, Zhu Y, Wei J, Chen L, Chen S, Lai D. The global prevalence of premature ovarian insufficiency: a systematic review and meta-analysis. Climacteric J Int Menopause Soc 2023;26:95-102. doi:10.1080/13697137.2022.2153033. (PMID: 10.1080/13697137.2022.2153033)
Vogt EC, Bratland E, Berland S, et al. Improving diagnostic precision in primary ovarian insufficiency using comprehensive genetic and autoantibody testing. Hum Reprod Oxf Engl 2023;39:177-189. doi:10.1093/humrep/dead233. (PMID: 10.1093/humrep/dead233)
Touraine P, Chabbert-Buffet N, Plu-Bureau G, Duranteau L, Sinclair AH, Tucker EJ. Premature ovarian insufficiency. Nat Rev Dis Primer 2024;10:63. doi:10.1038/s41572-024-00547-5. (PMID: 10.1038/s41572-024-00547-5)
Cambray S, Dubreuil S, Tejedor I, Dulon J, Touraine P. Family building after diagnosis of premature ovarian insufficiency: a cross-sectional survey in 324 women. Eur J Endocrinol 2023;188:lvad018. doi:10.1093/ejendo/lvad018. (PMID: 10.1093/ejendo/lvad018)
Verrilli LE, Allen-Brady K, Johnstone EB, Alvord MA, Welt CK. Family size for women with primary ovarian insufficiency and their relatives. Hum Reprod 2023;38:1991-1997. doi:10.1093/humrep/dead168. (PMID: 10.1093/humrep/dead168)
Podfigurna-Stopa A, Czyzyk A, Grymowicz M, et al. Premature ovarian insufficiency: the context of long-term effects. J Endocrinol Invest 2016;39:983-990. doi:10.1007/s40618-016-0467-z. (PMID: 10.1007/s40618-016-0467-z)
Ryan J, Scali J, Carrière I, et al. Impact of a premature menopause on cognitive function in later life. BJOG 2014;121:1729-1739. doi:10.1111/1471-0528.12828. (PMID: 10.1111/1471-0528.12828)
Bachelot A, Nicolas C, Gricourt S, et al. Poor compliance to hormone therapy and decreased bone mineral density in women with premature ovarian insufficiency. PLoS One 2016;11:e0164638. doi:10.1371/journal.pone.0164638. (PMID: 10.1371/journal.pone.0164638)
Muka T, Oliver-Williams C, Kunutsor S, et al. Association of age at onset of menopause and time since onset of menopause with cardiovascular outcomes, intermediate vascular traits, and all-cause mortality: a systematic review and meta-analysis. JAMA Cardiol 2016;1:767-776. doi:10.1001/jamacardio.2016.2415. (PMID: 10.1001/jamacardio.2016.2415)
Roeters van Lennep JE, Heida KY, Bots ML, Hoek A. Collaborators of the Dutch Multidisciplinary Guideline Development Group on Cardiovascular Risk Management after Reproductive Disorders. Cardiovascular disease risk in women with premature ovarian insufficiency: a systematic review and meta-analysis. Eur J Prev Cardiol 2016;23:178-186. doi:10.1177/2047487314556004. (PMID: 10.1177/2047487314556004)
Honigberg MC, Zekavat SM, Aragam K, et al. Association of premature natural and surgical menopause with incident cardiovascular disease. JAMA 2019;322:2411-2421. doi:10.1001/jama.2019.19191. (PMID: 10.1001/jama.2019.19191)
Zhu D, Chung HF, Dobson AJ, et al. Age at natural menopause and risk of incident cardiovascular disease: a pooled analysis of individual patient data. Lancet Public Health 2019;4:e553-e564. doi:10.1016/S2468-2667(19)30155-0. (PMID: 10.1016/S2468-2667(19)30155-0)
Cai WY, Luo X, Wu W, et al. Metabolic differences in women with premature ovarian insufficiency: a systematic review and meta-analysis. J Ovarian Res 2022;15:109. doi:10.1186/s13048-022-01041-w. (PMID: 10.1186/s13048-022-01041-w)
Groff AA, Covington SN, Halverson LR, et al. Assessing the emotional needs of women with spontaneous premature ovarian failure. Fertil Steril 2005;83:1734-1741. doi:10.1016/j.fertnstert.2004.11.067. (PMID: 10.1016/j.fertnstert.2004.11.067)
Singer D, Mann E, Hunter MS, Pitkin J, Panay N. The silent grief: psychosocial aspects of premature ovarian failure. Climacteric J Int Menopause Soc 2011;14:428-437. doi:10.3109/13697137.2011.571320. (PMID: 10.3109/13697137.2011.571320)
Davis M, Ventura JL, Wieners M, et al. The psychosocial transition associated with spontaneous 46,XX primary ovarian insufficiency: illness uncertainty, stigma, goal flexibility, and purpose in life as factors in emotional health. Fertil Steril 2010;93:2321-2329. doi:10.1016/j.fertnstert.2008.12.122. (PMID: 10.1016/j.fertnstert.2008.12.122)
Alzubaidi NH, Chapin HL, Vanderhoof VH, Calis KA, Nelson LM. Meeting the needs of young women with secondary amenorrhea and spontaneous premature ovarian failure. Obstet Gynecol 2002;99(5 Pt 1):720-725. doi:10.1016/s0029-7844(02)01962-2. (PMID: 10.1016/s0029-7844(02)01962-2)
Kalantaridou SN, Naka KK, Papanikolaou E, et al. Impaired endothelial function in young women with premature ovarian failure: normalization with hormone therapy. J Clin Endocrinol Metab 2004;89:3907-3913. doi:10.1210/jc.2004-0015. (PMID: 10.1210/jc.2004-0015)
Webber L, Davies M, et alEuropean Society for Human Reproduction and Embryology (ESHRE) Guideline Group on POI. ESHRE Guideline: management of women with premature ovarian insufficiency. Hum Reprod Oxf Engl 2016;31:926-937. doi:10.1093/humrep/dew027. (PMID: 10.1093/humrep/dew027)
Sullivan SD, Sarrel PM, Nelson LM. Hormone replacement therapy in young women with primary ovarian insufficiency and early menopause. Fertil Steril 2016;106:1588-1599. doi:10.1016/j.fertnstert.2016.09.046. (PMID: 10.1016/j.fertnstert.2016.09.046)
Panay N, Anderson RA, Nappi RE, et al. Premature ovarian insufficiency: an International Menopause Society White Paper. Climacteric 2020;23:426-446. doi:10.1080/13697137.2020.1804547. (PMID: 10.1080/13697137.2020.1804547)
Rezende GP, Dassie T, Gomes DAY, Benetti-Pinto CL. Cardiovascular risk factors in premature ovarian insufficiency using hormonal therapy. Rev Bras Ginecol E Obstet Rev Fed Bras Soc Ginecol E Obstet 2023;45:312-318. doi:10.1055/s-0043-1770088. (PMID: 10.1055/s-0043-1770088)
Golezar S, Keshavarz Z, Ramezani Tehrani F, Ebadi A. An exploration of factors affecting the quality of life of women with primary ovarian insufficiency: a qualitative study. BMC Womens Health 2020;20:163. doi:10.1186/s12905-020-01029-y. (PMID: 10.1186/s12905-020-01029-y)
Johnston-Ataata K, Flore J, Kokanović R. Women’s experiences of diagnosis and treatment of early menopause and premature ovarian insufficiency: a qualitative study. Semin Reprod Med 2020;38(4-05):247-255. doi:10.1055/s-0040-1721463. (PMID: 10.1055/s-0040-1721463)
Christin-Maitre S, Givony M, Albarel F, et al. Position statement on the diagnosis and management of premature/primary ovarian insufficiency (except Turner Syndrome). Ann Endocrinol 2021;82:555-571. doi:10.1016/j.ando.2021.09.001. (PMID: 10.1016/j.ando.2021.09.001)
Rahabi H, Givony M, Demaret B, et al. The experience of diagnosis announcement in rare endocrine diseases: A survey of the French FIRENDO network. Ann Endocrinol 2024;85:27-35. doi:10.1016/j.ando.2023.10.008. (PMID: 10.1016/j.ando.2023.10.008)
Driscoll MA, Davis MC, Aiken LS, et al. Psychosocial vulnerability, resilience resources, and coping with infertility: a longitudinal model of adjustment to primary cvarian insufficiency. Ann Behav Med Publ Soc Behav Med 2016;50:272-284. doi:10.1007/s12160-015-9750-z. (PMID: 10.1007/s12160-015-9750-z)
Moukhah S, Ghorbani B, Behboodi-Moghadam Z, Zafardoust S. Perceptions and experiences of women with premature ovarian insufficiency about sexual health and reproductive health. BMC Womens Health 2021;21:54. doi:10.1186/s12905-021-01197-5. (PMID: 10.1186/s12905-021-01197-5)
Moukhah S, Ghorbani B, Behboodi Moghadam Z, et al. Perception of female identity in women with premature ovarian insufficiency: a qualitative study. J Reprod Infertil 2023;24:49-57. doi:10.18502/jri.v24i1.11909. (PMID: 10.18502/jri.v24i1.11909)
Tian Y, Zhang X, Xin Z, et al. Premature ovarian insufficiency is associated with increased risk of depression, anxiety, and poor life quality: a systematic review and meta-analysis. Alpha Psychiatry 2024;25:132-141. doi:10.5152/alphapsychiatry.2024.231501. (PMID: 10.5152/alphapsychiatry.2024.231501)
McDonald IR, Welt CK, Dwyer AA. Health-related quality of life in women with primary ovarian insufficiency: a scoping review of the literature and implications for targeted interventions. Hum Reprod 2022;37:2817-2830. doi:10.1093/humrep/deac200. (PMID: 10.1093/humrep/deac200)
Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000;5:302-311. doi:10.1634/theoncologist.5-4-302. (PMID: 10.1634/theoncologist.5-4-302)
Mirza RD, Ren M, Agarwal A, Guyatt GH. Assessing patient perspectives on receiving bad news: a survey of 1337 patients with life-changing diagnoses. AJOB Empir Bioeth 2019;10:36-43. doi:10.1080/23294515.2018.1543218. (PMID: 10.1080/23294515.2018.1543218)
Matthews T, Baken D, Ross K, Ogilvie E, Kent L. The experiences of patients and their family members when receiving bad news about cancer: a qualitative meta-synthesis. Psychooncology 2019;28:2286-2294. doi:10.1002/pon.5241. (PMID: 10.1002/pon.5241)
von Blanckenburg P, Hofmann M, Rief W, Seifart U, Seifart C. Assessing patients´ preferences for breaking Bad News according to the SPIKES-Protocol: the MABBAN scale. Patient Educ Couns 2020;103:1623-1629. doi:10.1016/j.pec.2020.02.036. (PMID: 10.1016/j.pec.2020.02.036)
Contributed Indexing: Keywords: Diagnosis; Gynecologic follow-up; Hormone replacement therapy; Patient’s satisfaction; Premature ovarian insufficiency
Entry Date(s): Date Created: 20250902 Date Completed: 20251226 Latest Revision: 20260307
Update Code: 20260307
DOI: 10.1097/GME.0000000000002623
PMID: 40891627
Βάση Δεδομένων: MEDLINE
Περιγραφή
ISSN:1530-0374
DOI:10.1097/GME.0000000000002623