Communicating endometriosis with young women to decrease diagnosis time
Naomi A. Shadbolt A , Melissa A. Parker B C and Lindy A. Orthia AA Australian National Centre for the Public Awareness of Science, The Australian National University, Acton, ACT 0200, Australia.
B Canberra Endometriosis Centre, Department of Obstetrics and Gynaecology, The Canberra Hospital, PO Box 11, Woden, ACT 2606, Australia.
C Corresponding author. Email: melissa.parker@act.gov.au
Health Promotion Journal of Australia 24(2) 151-154 https://doi.org/10.1071/HE12915
Submitted: 25 September 2012 Accepted: 16 April 2013 Published: 24 May 2013
Abstract
Issues addressed: Endometriosis is estimated to affect approximately 10% of women. Although early detection may enhance health outcomes and fertility, there is a recognised diagnostic delay of 6.7 years. There are limited data on ways to discuss endometriosis with young women. The aims of the present study were to determine what young women know about endometriosis, what young women want to know about endometriosis and how this is best communicated to promote early detection.
Methods: Women aged 16–25 years were invited to complete an online survey that was advertised via Facebook, email, Twitter and flyers at high schools and a university.
Results: In all, 131 women responded to the survey. Fifty-two percent of participants had heard of endometriosis, 89% thought teenagers should be educated about endometriosis and 78% thought that young men should also be educated about the condition. Favoured sources for obtaining information were schools (40%), the Internet (22%) and magazines (13%). Participants were most comfortable talking to a doctor (75%), parent (59%) or friend (51%). Participants primarily wanted to know about the disease, its symptoms, risk factors and treatment. Many participants’ descriptions of endometriosis were vague or inaccurate.
Conclusions: The results of the present study indicate that young women are keen to learn about endometriosis, particularly its symptoms. Preferential sources of information appear to be schools or the Internet, and young women appear more comfortable talking to doctors.
So what?: To promote early detection of endometriosis, health promotion activities should direct their information towards sources that young women prefer.
Key words: adolescents, knowledge, patient education, reproductive health, women.
References
[1] Andersch B, Milsom I (1982) An epidemiologic study of young women with dysmenorrhea. Am J Obstet Gynecol 144, 655–60.[2] Banikarim C, Chako MR, Kelder SH (2000) Prevalence and impact of dysmenorrhoea on Hispanic female adolescents. Arch Pediatr Adolesc Med 154, 1226–9.
[3] Hillen TI, Grbavac SL, Johnston PJ, Straton JA, Keogh JM (1999) Primary dysmenorrhea in young Western Australian women: Prevalence, impact, and knowledge of treatment. J Adolesc Health 25, 40–5.
| Primary dysmenorrhea in young Western Australian women: Prevalence, impact, and knowledge of treatment.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1MzksFahtw%3D%3D&md5=d5d664442a2b725a6263728bbcdc5f0eCAS | 10418884PubMed |
[4] Klein JR, Litt IF (1981) Epidemiology of adolescent dysmenorrhea. Pediatrics 68, 661–4.
[5] Parker MA, Sneddon AE, Arbon P (2010) The menstrual disorder of teenagers (MDOT) study: determining typical menstrual patterns and menstrual disturbance in a large population-based study of Australian teenagers. BJOG 117, 185–92.
| The menstrual disorder of teenagers (MDOT) study: determining typical menstrual patterns and menstrual disturbance in a large population-based study of Australian teenagers.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD1MfhvVSgsw%3D%3D&md5=7efcfa0ada52763c919a527dc3565101CAS | 19874294PubMed |
[6] Wilson CA, Keye WR (1989) A survey of adolescent dysmenorrhea and premenstrual symptom frequency: a model program for prevention, detection, and treatment. J Adolesc Health Care 10, 317–22.
| A survey of adolescent dysmenorrhea and premenstrual symptom frequency: a model program for prevention, detection, and treatment.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaL1M3nslylug%3D%3D&md5=6d565410925d24d56f20c69d65aa87aaCAS | 2786516PubMed |
[7] Goldstein DP, De Cholnoky C, Emans SJ (1980) Adolescent endometriosis. J Adolesc Health Care 1, 37–41.
| Adolescent endometriosis.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaL38%2FnsFGhsQ%3D%3D&md5=56cb9232d617fba0f1625031e7e76317CAS | 6458589PubMed |
[8] Laufer MR, Goitein BA, Bush M (1997) Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. J Pediatr Adolesc Gynecol 10, 199–202.
| Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK1c%2Fltleqsg%3D%3D&md5=217ac811876ee33ea7386445392b755cCAS | 9391902PubMed |
[9] Reese KA, Reddy S, Rock JA (1996) Endometriosis in an adolescent population: the Emory experience. J Pediatr Adolesc Gynecol 9, 125–8.
| Endometriosis in an adolescent population: the Emory experience.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK28zovVertA%3D%3D&md5=f8cf9339219607da0b0805924af430f2CAS | 8795787PubMed |
[10] Chapron C, Lafay-Pillet MC, Monceau E, Borghese B, Ngô C, Souza C, de Ziegler D (2011) Questioning patients about their adolescent history can identify markers associated with deep infiltrating endometriosis. Fertil Steril 95, 877–81.
| Questioning patients about their adolescent history can identify markers associated with deep infiltrating endometriosis.Crossref | GoogleScholarGoogle Scholar | 21071024PubMed |
[11] Nnoaham KE, Hummelshoj L, Webster P, d’Hooghe T, de Cicco Nardone F, de Cicco Nardone C, Jenkinson C, Kennedy SH, Zondervan KT, World Endometriosis Research Foundation Global Study of Women’s Health Consortium (2011) Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 96, 366–73.
| Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.Crossref | GoogleScholarGoogle Scholar | 21718982PubMed |
[12] Seear K (2009) The etiquette of endometriosis: stigmatisation, menstrual concealment and the diagnostic delay. Soc Sci Med 69, 1220–7.
| The etiquette of endometriosis: stigmatisation, menstrual concealment and the diagnostic delay.Crossref | GoogleScholarGoogle Scholar | 19699572PubMed |
[13] Dmowski WP, Lesniewicz R, Rana N, Pepping P, Nourasalehi M (1997) Changing trends in the diagnosis of endometriosis: a comparative study of women with pelvic endometriosis presenting with chronic pelvic pain or infertility. Fertil Steril 67, 238–43.
| Changing trends in the diagnosis of endometriosis: a comparative study of women with pelvic endometriosis presenting with chronic pelvic pain or infertility.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK2s7nsV2gtA%3D%3D&md5=489627b44cc0e77d4939890652a401cdCAS | 9022596PubMed |
[14] Laufer MR, Sanfilippo J, Rose G (2003) Adolescent endometriosis: diagnosis and treatment approaches. J Pediatr Adolesc Gynecol 16, S3–11.
| Adolescent endometriosis: diagnosis and treatment approaches.Crossref | GoogleScholarGoogle Scholar | 12742180PubMed |
[15] Falcone T, Lebovic DI (2011) Clinical management of endometriosis. Obstet Gynecol 118, 691–705.
| Clinical management of endometriosis.Crossref | GoogleScholarGoogle Scholar | 1:CAS:528:DC%2BC3MXht1eqs73N&md5=016c8704945ad19c34763e32cd558795CAS | 21860303PubMed |
[16] Fourquet J, Baez L, Figueroa M, Iriarte I, Flores I (2011) Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertil Steril 96, 107–12.
| Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity.Crossref | GoogleScholarGoogle Scholar | 21621771PubMed |
[17] Gao X, Yeh YC, Outley J, Simon J, Botteman M, Spalding J (2006) Health-related quality of life burden of women with endometriosis: a literature review. Curr Med Res Opin 22, 1787–97.
| Health-related quality of life burden of women with endometriosis: a literature review.Crossref | GoogleScholarGoogle Scholar | 16968582PubMed |
[18] Shah DK, Moravek MB, Vahratian A, Dalton VK, Lebovic DI (2010) Public perceptions of endometriosis: perspectives from both genders. Acta Obstet Gynecol Scand 89, 646–50.
| Public perceptions of endometriosis: perspectives from both genders.Crossref | GoogleScholarGoogle Scholar | 20235893PubMed |
[19] Lofland J, Lofland LH. Typological systems: analysing social settings. Belmont: Wadsworth; 1995.
[20] Ballweg ML, Laufer MR (2011) Adolescent endometriosis: improving the comfort level of health care providers treating adolescents with endometriosis. J Pediatr Adolesc Gynecol 24, S1
| Adolescent endometriosis: improving the comfort level of health care providers treating adolescents with endometriosis.Crossref | GoogleScholarGoogle Scholar | 21856544PubMed |