Best practices in Menstrual Health and Management for Adolescents with Disabilities Worldwide
Main Article Content
Abstract
The onset of menstruation can present significant challenges, including vulnerability, abuse risk, unintended pregnancies, difficulties with managing menstrual hygiene, abnormal uterine bleeding, painful menses, behavioral and mood changes, or changes in seizure pattern. These challenges manifest in an even greater way for individuals with disabilities and are often accompanied by significant societal repercussions. While adolescents with disabilities already are disadvantaged due to medical challenges and inaccessible environments, adding the burden of menstruation—with all its social, cultural, and medical challenges—can be overwhelming. Menstrual suppression is a way to reduce menstrual frequency, duration and intensity. It is used for a variety of reasons, including to improve quality of life for those who experience significant negative impacts or restrictions in activities due to their menses. Adolescents with disabilities may seek menstrual suppression for help with irregular or heavy bleeding, dysmenorrhea, behavioral changes, or personal hygiene. While this is one way to improve quality of life surrounding menstruation, improved policies and health education globally are also needed to combat the menstrual health barriers faced by this population. The purpose of this review is to summarize best practices in menstrual health and management for adolescents with disabilities worldwide.
Article Details
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
2. Sommer M, Caruso BA, Sahin M, et al. A Time for Global Action: Addressing Girls' Menstrual Hygiene Management Needs in Schools. PLoS Med. 2016;13(2):e1001962.
3. World Health Organization. New report highlights neglected health needs of children with developmental disabilities. https://www.who.int/news/item/15-09-2023-new-reports-highlights-neglected-health-needs-of-children-with-developmental-disabilities. Accessed June 2, 2024.
4. UNICEF. Nearly 240 million children with disabilities around the world, UNICEF’s most comprehensive statistical analysis finds. 2021; www.unicef.org/press-releases/nearly-240-million-children-disabilities-around-world-unicefs-most-comprehensive. Accessed June 2, 2024.
5. Dural O, Tas IS, Akhan SE. Management of Menstrual and Gynecologic Concerns in Girls with Special Needs. J Clin Res Pediatr Endocrinol. 2020;12(Suppl 1):41-45.
6. O'Brien KE, Rosen MW, Ernst SD. Obstetric and Gynecologic Care for Individuals with Disabilities. Obstet Gynecol Clin North Am. 2024;51(1):43-56.
7. Crimmins EM, Zhang Y, Saito Y. Trends Over 4 Decades in Disability-Free Life Expectancy in the United States. Am J Public Health. 2016;106(7):1287-1293.
8. Centers for Disease Control and Prevention. Disability and Health Data System (DHDS). https://dhds.cdc.gov/SP. Accessed December 23, 2024.
9. Streur CS, Schafer CL, Garcia VP, Quint EH, Sandberg DE, Wittmann DA. "If Everyone Else Is Having This Talk With Their Doctor, Why Am I Not Having This Talk With Mine?": The Experiences of Sexuality and Sexual Health Education of Young Women With Spina Bifida. J Sex Med. 2019; 16(6):853-859.
10. Leanage A, Burgess R, Ogrodnik M, Malik P. Sexual Health and Sexual Education for Women with Disabilities: Challenges & Opportunities. 2018; https://docs.wixstatic.com/ugd/b2d084_4b5e683f5921486f9a76a7a5bc4dad8b.pdf. Accessed December 23, 2024.
11. World Health Organization. Promoting sexual and reproductive health for persons with disabilities: WHO/UNFPA guidance note. 2009; https://www.unfpa.org/sites/default/files/pub-pdf/srh_for_disabilities.pdf Accessed December 23, 2024.
12. Gatti C, Del Rossi C, Ferrari A, Casolari E, Casadio G, Scire G. Predictors of successful sexual partnering of adults with spina bifida. J Urol. 2009;182(4 Suppl):1911-1916.
13. Streur CS, Schafer CL, Garcia VP, et al. "He told me it would be extremely selfish of me to even consider [having kids]": The importance of reproductive health to women with spina bifida and the lack of support from their providers. Disabil Health J. 2020;13(2):100815.
14. Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. "How did that happen?" Public responses to women with mobility disability during pregnancy. Disabil Health J. 2015;8(3):380-387.
15. Gray SH, Byrne R, Christensen S, et al. Women with cerebral palsy: A qualitative study about their experiences with sexual and reproductive health education and services. J Pediatr Rehabil Med. 2021;14(2):285-293.
16. Esmail S, Darry K, Walter A, Knupp H. Attitudes and perceptions towards disability and sexuality. Disabil Rehabil. 2010;32(14):1148-1155.
17. Nosek MA, Howland C, Rintala DH, Young ME, Chanpong GF. National Study of Women with Physical Disabilities: Final Report. Sex Disabil. 2001;19(1):5-40.
18. Casteel C, Martin SL, Smith JB, Gurka KK, Kupper LL. National study of physical and sexual assault among women with disabilities. Inj Prev. 2008;14(2):87-90.
19. Basile KC, Breiding MJ, Smith SG. Disability and Risk of Recent Sexual Violence in the United States. Am J Public Health. 2016;106(5):928-933.
20. Rowen TS, Stein S, Tepper M. Sexual health care for people with physical disabilities. J Sex Med. 2015;12(3):584-589.
21. McRee AL, Haydon AA, Halpern CT. Reproductive health of young adults with physical disabilities in the U.S. Prev Med. 2010;51(6):502-504.
22. Jones L, Bellis MA, Wood S, et al. Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet. 2012;380(9845): 899-907.
23. Boosey R, Prestwich G, Deave T. Menstrual hygiene management amongst schoolgirls in the Rukungiri district of Uganda and the impact on their education: a cross-sectional study. Pan Afr Med J. 2014;19:253.
24. Garg S, Anand T. Menstruation related myths in India: strategies for combating it. J Family Med Prim Care. 2015;4(2):184-186.
25. Mukherjee A, Lama M, Khakurel U, et al. Perception and practices of menstruation restrictions among urban adolescent girls and women in Nepal: a cross-sectional survey. Reprod Health. 2020;17(1):81.
26. Alenizy H, Aleyeidi N, Almutairi R, et al. Assessment of the Readiness, Beliefs, and Practices Regarding Menstruation Among Women in Saudi Arabia. Int J Womens Health. 2024;16:1875-1887.
27. Hennegan J, Shannon AK, Rubli J, Schwab KJ, Melendez-Torres GJ. Women's and girls' experiences of menstruation in low- and middle-income countries: A systematic review and qualitative metasynthesis. PLoS Med. 2019;16(5): e1002803.
28. World Health Organization. Menstrual health is a fundamental human right. 2024; https://www.who.int/europe/news-room/15-08-2024-menstrual-health-is-a-fundamental-human-right. Accessed January 11, 2025.
29. Smiles D, Short S, Sommer M. "I Didn't Tell Anyone Because I Was Very Afraid": Girls' Experiences of Menstruation in Contemporary Ethiopia. Womens Reprod Health (Phila). 2017;4(3):185-197.
30. The Lancet Child Adolescent Health. Normalising menstruation, empowering girls. Lancet Child Adolesc Health. 2018;2(6):379.
31. Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. Communicating with Patients with Disability: Perspectives of Practicing Physicians. J Gen Intern Med. 2019;34(7):1139-1145.
32. Iezzoni LI, Rao SR, Ressalam J, et al. Physicians' Perceptions Of People With Disability And Their Health Care. Health Aff (Millwood). 2021;40(2):297-306.
33. NASPAG Essentials of Pediatric and Adolescent Gynecology. Amsterdam: Elsevier Health Sciences; 2024.
34. World Health Organization. World Report on Disability. 2011; https://www.who.int/publications/i/item/9789241564182. Accessed December 23, 2024.
35. Kantartzis KL, Sucato GS. Menstrual suppression in the adolescent. J Pediatr Adolesc Gynecol. 2013;26(3):132-137.
36. American College of Obstetricians Gynecologists' Committee on Adolescent Health Care. Committee Opinion No. 668: Menstrual Manipulation for Adolescents With Physical and Developmental Disabilities. Obstet Gynecol. 2016;128(2):e20-25.
37. Kirkham YA, Ornstein MP, Aggarwal A, McQuillan S. No. 313-Menstrual Suppression in Special Circumstances. J Obstet Gynaecol Can. 2019;41(2):e7-e17.
38. Bradley LD, Gueye NA. The medical management of abnormal uterine bleeding in reproductive-aged women. Am J Obstet Gynecol. 2016;214(1):31-44.
39. Bofill Rodriguez M, Lethaby A, Farquhar C. Non-steroidal anti-inflammatory drugs for heavy menstrual bleeding. Cochrane Database Syst Rev. 2019;9(9):CD000400.
40. Lukes AS, Freeman EW, Van Drie D, Baker J, Adomako TL. Safety of tranexamic acid in women with heavy menstrual bleeding: an open-label extension study. Womens Health (Lond). 2011;7(5):591-598.
41. Bonnar J, Sheppard BL. Treatment of menorrhagia during menstruation: randomised controlled trial of ethamsylate, mefenamic acid, and tranexamic acid. BMJ. 1996;313(7057):579-582.
42. Leminen H, Hurskainen R. Tranexamic acid for the treatment of heavy menstrual bleeding: efficacy and safety. Int J Womens Health. 2012; 4:413-421.
43. Quint EH. Adolescents with Special Needs: Clinical Challenges in Reproductive Health Care. J Pediatr Adolesc Gynecol. 2016;29(1):2-6.
44. Reddy DS. Clinical pharmacokinetic interactions between antiepileptic drugs and hormonal contraceptives. Expert Rev Clin Pharmacol. 2010;3 (2):183-192.
45. Wright JD, Herzog TJ, Tsui J, et al. Nationwide trends in the performance of inpatient hysterectomy in the United States. Obstet Gynecol. 2013;122(2 Pt 1):233-241.
46. Wright KP, Johnson JV. Evaluation of extended and continuous use oral contraceptives. Ther Clin Risk Manag. 2008;4(5):905-911.
47. de Bastos M, Stegeman BH, Rosendaal FR, et al. Combined oral contraceptives: venous thrombosis. Cochrane Database Syst Rev. 2014;2014(3):CD010813.
48. Daunov M, Rondinelli J, Ahuja SP, Stehouwer NR. Prevalence of Venous Thromboembolism in Ambulatory and Non-Ambulatory Patients with Cerebral Palsy. Blood. 2019;134(Supplement 1):2428.
49. Quint EH, O'Brien RF, Committee On A, North American Society for P, Adolescent G. Menstrual Management for Adolescents With Disabilities. Pediatrics. 2016;138(1).
50. Fei YF, Ernst SD, Dendrinos ML, Quint EH. Satisfaction With Hormonal Treatment for Menstrual Suppression in Adolescents and Young Women With Disabilities. J Adolesc Health. 2021; 69(3):482-488.
51. Watson KC, Lentz MJ, Cain KC. Associations between fracture incidence and use of depot medroxyprogesterone acetate and anti-epileptic drugs in women with developmental disabilities. Womens Health Issues. 2006;16(6):346-352.
52. Fan D, Miao J, Fan X, Wang Q, Sun M. Effects of valproic acid on bone mineral density and bone metabolism: A meta-analysis. Seizure. 2019;73:56-63.
53. Dussault PM, Lazzari AA. Epilepsy and osteoporosis risk. Curr Opin Endocrinol Diabetes Obes. 2017;24(6):395-401.
54. Verrotti A, Di Corcia G, Morgese G, Trotta D, Chiarelli F. Epilepsy and adolescents. Panminerva Med. 2003;45(4):231-240.
55. Ali M, Akin A, Bahamondes L, et al. Extended use up to 5 years of the etonogestrel-releasing subdermal contraceptive implant: comparison to levonorgestrel-releasing subdermal implant. Hum Reprod. 2016;31(11):2491-2498.
56. McNicholas C, Swor E, Wan L, Peipert JF. Prolonged use of the etonogestrel implant and levonorgestrel intrauterine device: 2 years beyond Food and Drug Administration-approved duration. Am J Obstet Gynecol. 2017;216(6):586 e581-586 e586.
57. Deokar AM, Jackson W, Omar HA. Menstrual bleeding patterns in adolescents using etonogestrel (ENG) implant. Int J Adolesc Med Health. 2011; 23(1):75-77.
58. Berlan E, Mizraji K, Bonny AE. Twelve-month discontinuation of etonogestrel implant in an outpatient pediatric setting. Contraception. 2016; 94(1):81-86.
59. McNicholas C, Maddipati R, Zhao Q, Swor E, Peipert JF. Use of the etonogestrel implant and levonorgestrel intrauterine device beyond the U.S. Food and Drug Administration-approved duration. Obstet Gynecol. 2015;125(3):599-604.
60. Schwartz BI, Alexander M, Breech LL. Intrauterine Device Use in Adolescents With Disabilities. Pediatrics. 2020;146(2).
61. Hillard PJ. Menstrual suppression with the levonorgestrel intrauterine system in girls with developmental delay. J Pediatr Adolesc Gynecol. 2012;25(5):308-313.
62. Pillai M, O'Brien K, Hill E. The levonorgestrel intrauterine system (Mirena) for the treatment of menstrual problems in adolescents with medical disorders, or physical or learning disabilities. BJOG. 2010;117(2):216-221.
63. Savasi I, Jayasinghe K, Moore P, Jayasinghe Y, Grover SR. Complication rates associated with levonorgestrel intrauterine system use in adolescents with developmental disabilities. J Pediatr Adolesc Gynecol. 2014;27(1):25-28.
64. Settnes A, Moeller C, Topsoee MF, et al. Complications after benign hysterectomy, according to procedure: a population-based prospective cohort study from the Danish hysterectomy database, 2004-2015. BJOG. 2020;127(10):1269-1279.