Semin Reprod Med 2018; 36(01): 035-041
DOI: 10.1055/s-0038-1668086
Review Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

The Needs of Women and Healthcare Providers regarding Polycystic Ovary Syndrome Information, Resources, and Education: A Systematic Search and Narrative Review

Melanie Gibson-Helm
1   Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia
,
Eliza C. Tassone
1   Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia
,
Helena J. Teede
1   Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia
,
Anuja Dokras
2   Department of Obstetrics and Gynecology, University of Pennsylvania, Philadelphia, Pennsylvania
,
Rhonda Garad
1   Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia
› Author Affiliations
Funding This review received no direct funding. Dr. Gibson-Helm and Prof. Teede are National Health and Medical Research Council Research Fellows (1110701 and 1042516).
Further Information

Publication History

Publication Date:
06 September 2018 (online)

Abstract

This article aims to identify and summarize the information, resource, and education needs of women with polycystic ovary syndrome (PCOS) and their healthcare providers. A systematic search of peer-reviewed, primary research literature was conducted. A total of 4,230 articles were identified, duplicates were removed, as well as the title and abstract of 2,819 studies and the full texts of 123 studies were screened against predetermined inclusion criteria. Findings from 35 included studies are described narratively. Main outcome measures include women's perceived needs for, and experiences of, PCOS care and information; healthcare providers' delivery of PCOS care and information; and healthcare providers' perceived needs for PCOS information, education programs, or professional development. There is a wealth of literature informing how PCOS information, education, and resources can better meet the needs of women, and about the role women expect healthcare providers to play in providing information within optimal PCOS care. However, few studies evaluate how well existing resources meet women's diverse needs. There is growing indirect evidence about the information and education needed by healthcare providers to provide best-practice PCOS care. However, little research has directly investigated healthcare providers' information needs or efficacy of PCOS-specific educational programs for healthcare providers. PCOS resources for women should be comprehensive, evidence-based, include the bio-psychosocial dimensions of the condition, and available through a variety of modes. The range of healthcare providers that women may seek care from need resources to support consistent use of the recommended diagnostic criteria, effective recommendation of lifestyle management, and early detection and treatment of symptoms and complications.

Capsule

PCOS education resources for women should be comprehensive, evidence-based, and include bio-psychosocial dimensions. Healthcare provider resources should focus on recommended diagnostic criteria, lifestyle management, and assessment/treatment of symptoms and complications.


 
  • References

  • 1 Bozdag G, Mumusoglu S, Zengin D, Karabulut E, Yildiz BO. The prevalence and phenotypic features of polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod 2016; 31 (12) 2841-2855
  • 2 The Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group. Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome. Fertil Steril 2004; 81: 19-25
  • 3 Moran LJ, Misso ML, Wild RA, Norman RJ. Impaired glucose tolerance, type 2 diabetes and metabolic syndrome in polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod Update 2010; 16 (04) 347-363
  • 4 Cooney LG, Lee I, Sammel MD, Dokras A. High prevalence of moderate and severe depressive and anxiety symptoms in polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod 2017; 32 (05) 1075-1091
  • 5 Teede HJ, Misso ML, Deeks AA. , et al; Guideline Development Groups. Assessment and management of polycystic ovary syndrome: summary of an evidence-based guideline. Med J Aust 2011; 195 (06) S65-S112
  • 6 Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. J Clin Endocrinol Metab 2017; 102 (02) 604-612
  • 7 Avery JC, Braunack-Mayer AJ. The information needs of women diagnosed with polycystic ovarian syndrome--implications for treatment and health outcomes. BMC Womens Health 2007; 7: 9
  • 8 Tomlinson J, Pinkney J, Adams L. , et al. The diagnosis and lived experience of polycystic ovary syndrome: a qualitative study. J Adv Nurs 2017; 73 (10) 2318-2326
  • 9 Snyder BS. The lived experience of women diagnosed with polycystic ovary syndrome. J Obstet Gynecol Neonatal Nurs 2006; 35 (03) 385-392
  • 10 Crete J, Adamshick P. Managing polycystic ovary syndrome: what our patients are telling us. J Holist Nurs 2011; 29 (04) 256-266
  • 11 Gibson-Helm ME, Lucas IM, Boyle JA, Teede HJ. Women's experiences of polycystic ovary syndrome diagnosis. Fam Pract 2014; 31 (05) 545-549
  • 12 Jones GL, Hall JM, Lashen HL, Balen AH, Ledger WL. Health-related quality of life among adolescents with polycystic ovary syndrome. J Obstet Gynecol Neonatal Nurs 2011; 40 (05) 577-588
  • 13 Deeks AA, Gibson-Helm ME, Paul E, Teede HJ. Is having polycystic ovary syndrome a predictor of poor psychological function including anxiety and depression?. Hum Reprod 2011; 26 (06) 1399-1407
  • 14 Tomlinson J, Letherby G, Pinkney J, Millward A, Stenhouse E. Raising awareness of polycystic ovary syndrome. Nurs Stand 2013; 27 (40) 35-39
  • 15 Sills ES, Perloe M, Tucker MJ, Kaplan CR, Genton MG, Schattman GL. Diagnostic and treatment characteristics of polycystic ovary syndrome: descriptive measurements of patient perception and awareness from 657 confidential self-reports. BMC Womens Health 2001; 1 (01) 3
  • 16 Krupp K, Fliegner M, Brunner F, Brucker S, Rall K, Richter-Appelt H. How do individuals with complete androgen insensitivity syndrome, Mayer-Rokitansky-Küster-Hauser syndrome or polycystic ovary syndrome experience contact to other affected persons?. Geburtshilfe Frauenheilkd 2012; 72 (11) 1009-1017
  • 17 Ching HL, Burke V, Stuckey BGA. Quality of life and psychological morbidity in women with polycystic ovary syndrome: body mass index, age and the provision of patient information are significant modifiers. Clin Endocrinol (Oxf) 2007; 66 (03) 373-379
  • 18 Jeanes YM, Barr S, Smith K, Hart KH. Dietary management of women with polycystic ovary syndrome in the United Kingdom: the role of dietitians. J Hum Nutr Diet 2009; 22 (06) 551-558
  • 19 Dean EH. An analysis of online resources for women with polycystic ovary syndrome. J Consum Health Internet 2011; 15: 361
  • 20 Percy CA, Gibbs T, Potter L, Boardman S. Nurse-led peer support group: experiences of women with polycystic ovary syndrome. J Adv Nurs 2009; 65 (10) 2046-2055
  • 21 Holbrey S, Coulson NS. A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome. BMC Womens Health 2013; 13: 51
  • 22 Boyle J, Hollands G, Beck S. , et al. Process evaluation of a pilot evidence-based Polycystic Ovary Syndrome clinic in the Torres Strait. Aust J Rural Health 2017; 25 (03) 175-181
  • 23 Sivayoganathan D, Maruthini D, Glanville JM, Balen AH. Full investigation of patients with polycystic ovary syndrome (PCOS) presenting to four different clinical specialties reveals significant differences and undiagnosed morbidity. Hum Fertil (Camb) 2011; 14 (04) 261-265
  • 24 Kulkarni M, Glanville J, Phillot S, Balen A. A review of paediatric and adolescent gynaecology services in a tertiary outpatient clinic. Hum Fertil (Camb) 2017; 20 (03) 168-178
  • 25 Ning N, Balen A, Brezina PR. , et al. How to recognize PCOS: results of a web-based survey at IVF-worldwide.com. Reprod Biomed Online 2013; 26 (05) 500-505
  • 26 Doll I, Doll R, Buhling KJ. Diagnosis and therapy of polycystic ovarian syndrome: results of a survey among German gynecologists with a review on literature. Arch Gynecol Obstet 2012; 285 (03) 689-697
  • 27 Dokras A, Saini S, Gibson-Helm M, Schulkin J, Cooney L, Teede H. Gaps in knowledge among physicians regarding diagnostic criteria and management of polycystic ovary syndrome. Fertil Steril 2017; 107 (06) 1380-1386.e1
  • 28 Cussons AJ, Stuckey BG, Walsh JP, Burke V, Norman RJ. Polycystic ovarian syndrome: marked differences between endocrinologists and gynaecologists in diagnosis and management. Clin Endocrinol (Oxf) 2005; 62 (03) 289-295
  • 29 Bonny AE, Appelbaum H, Connor EL. , et al; NASPAG Research Committee. Clinical variability in approaches to polycystic ovary syndrome. J Pediatr Adolesc Gynecol 2012; 25 (04) 259-261
  • 30 Conway G, Dewailly D, Diamanti-Kandarakis E. , et al; ESE PCOS Special Interest Group. European survey of diagnosis and management of the polycystic ovary syndrome: results of the ESE PCOS Special Interest Group's Questionnaire. Eur J Endocrinol 2014; 171 (04) 489-498
  • 31 Lawrenson R, Gibbons V, Nair P. , et al. Polycystic ovary syndrome: a review of cases from general practice. J Prim Health Care 2014; 6 (04) 328-330
  • 32 Auble B, Elder D, Gross A, Hillman JB. Differences in the management of adolescents with polycystic ovary syndrome across pediatric specialties. J Pediatr Adolesc Gynecol 2013; 26 (04) 234-238
  • 33 Bird ST, Hartzema AG, Etminan M, Brophy JM, Delaney JAC. Polycystic ovary syndrome and combined oral contraceptive use: a comparison of clinical practice in the United States to treatment guidelines. Gynecol Endocrinol 2013; 29 (04) 365-369
  • 34 Teede H, Gibson-Helm M, Norman RJ, Boyle J. Polycystic ovary syndrome: perceptions and attitudes of women and primary health care physicians on features of PCOS and renaming the syndrome. J Clin Endocrinol Metab 2014; 99 (01) E107-E111
  • 35 Kozica SL, Gibson-Helm ME, Teede HJ, Moran LJ. Assessing self-efficacy and self-help methods in women with and without polycystic ovary syndrome. Behav Med 2013; 39 (03) 90-96
  • 36 Sindhu S, Raajeswari PA. Impact of health and nutrition education on adolescent girls with polycystic ovary syndrome (PCOS). Ind J Health Wellbeing 2014; 5: 462-465
  • 37 Ko H, Teede H, Moran L. Analysis of the barriers and enablers to implementing lifestyle management practices for women with PCOS in Singapore. BMC Res Notes 2016; 9: 311
  • 38 Dhesi AS, Murtough KL, Lim JK. , et al. Metabolic screening in patients with polycystic ovary syndrome is largely underutilized among obstetrician-gynecologists. Am J Obstet Gynecol 2016; 215 (05) 579.e1-579.e5
  • 39 Asante A, Omurtag K, Stewart EA, Coddington CC. Screening for insulin resistance in polycystic ovary syndrome: views of physician members of the American Society for Reproductive Medicine. J Reprod Med 2015; 60 (9-10): 371-377
  • 40 Spencer AL, Bost JE, McNeil M. Do women's health internal medicine residency tracks make a difference?. J Womens Health (Larchmt) 2007; 16 (08) 1219-1223