title: Women's experiences of polycystic ovary syndrome diagnosis.
abstract: BACKGROUND
  Polycystic ovary syndrome (PCOS) is a common and complex endocrine condition affecting women across the lifespan. Diagnosis experience may impact on physical and emotional well-being and engagement with evidence-based management and treatment.
  
  
  OBJECTIVE
  To explore the perceived experience of PCOS diagnosis, prior to development of an evidence-based guideline for PCOS assessment and management.
  
  
  METHODS
  Cross-sectional study, involving devised questionnaires completed by a national, community-based sample of 210 women with a previous medical diagnosis of PCOS, aged 18-45 years, in Australia. Main outcome measures included time to diagnosis, number of health professionals seen and information provision.
  
  
  RESULTS
  Mean age (± standard deviation) was 31 (±5.8) years and median body mass index (interquartile range) was 30 (12) kg/m(2). For 24% of women, PCOS diagnosis took >2 years and 39% saw three or more health professionals before diagnosis was made. The majority (60%) reported they were not given or referred to information sources at time of diagnosis, 20% reported receiving information and 20% were given information but felt it was inadequate. Of those who reported provision of information at diagnosis, 62% felt dissatisfied with or indifferent to information provided about PCOS, 79% reported being provided with information about lifestyle management, 89% reported being provided with information about medical therapy, 83% about long-term complications and 95% about potential infertility.
  
  
  CONCLUSIONS
  PCOS diagnosis experience can be lengthy, involve many health professionals and leave unmet information needs. The current findings inform the need for evidence-based PCOS resources for women and health professionals.
authors.affiliation: Women's Public Health Research, Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton and.
authors.forename: Melanie E
authors.initials: ME
authors.lastname: Gibson-Helm
authors.affiliation: Women's Public Health Research, Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton and.
authors.forename: Isabelle M
authors.initials: IM
authors.lastname: Lucas
authors.affiliation: Women's Public Health Research, Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton and.
authors.forename: Jacqueline A
authors.initials: JA
authors.lastname: Boyle
authors.affiliation: Women's Public Health Research, Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Clayton and Diabetes and Vascular Medicine Unit, Monash Health, Clayton, Australia. helena.teede@monash.edu.
authors.forename: Helena J
authors.initials: HJ
authors.lastname: Teede
mesh_terms: D000328:Adult; D001315:Australia; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011085:Polycystic Ovary Syndrome / Q000150:complications / Q000175:diagnosis* / Q000628:therapy; D017410:Practice Guidelines as Topic; D011795:Surveys and Questionnaires; D013997:Time Factors
keywords: Diagnosis; diagnosis experience; evidence-based guideline; polycystic ovary syndrome.