Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome

Context:Polycystic ovary syndrome (PCOS) is a complex, chronic, and under-recognized disorder. Diagnosis experience may have lasting effects on well-being and self-management.Objective:To investigate PCOS diagnosis experiences, information provided, and concerns about PCOS.Design:Cross-sectional stu...

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Bibliographic Details
Published in:The journal of clinical endocrinology and metabolism Vol. 102; no. 2; pp. 604 - 612
Main Authors: Gibson-Helm, Melanie, Teede, Helena, Dunaif, Andrea, Dokras, Anuja
Format: Journal Article
Language:English
Published: Washington, DC Endocrine Society 01.02.2017
Copyright Oxford University Press
Oxford University Press
Subjects:
Adolescent
Adult
Clinical
Consumer health information
Consumer Health Information - standards
Consumer Health Information - statistics & numerical data
Cross-Sectional Studies
Delayed Diagnosis - statistics & numerical data
Diagnosis
Early experience
Editor's Choice
Female
Global Health - statistics & numerical data
Humans
Infertility
Medical personnel
Menstruation
Ovaries
Patient Education as Topic - standards
Patient Education as Topic - statistics & numerical data
Patient Satisfaction - statistics & numerical data
Polycystic ovary syndrome
Polycystic Ovary Syndrome - diagnosis
Polycystic Ovary Syndrome - epidemiology
Surveys and Questionnaires
Well being
Young Adult
ISSN:0021-972X, 1945-7197
Online Access:Get full text
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Summary:Context:Polycystic ovary syndrome (PCOS) is a complex, chronic, and under-recognized disorder. Diagnosis experience may have lasting effects on well-being and self-management.Objective:To investigate PCOS diagnosis experiences, information provided, and concerns about PCOS.Design:Cross-sectional study using an online questionnaire.Setting:Recruitment via support group web sites in 2015 to 2016.Participants:There were 1385 women with a reported diagnosis of PCOS who were living in North America (53.0%), Europe (42.2%), or other world regions (4.9%); of these, 64.8% were 18 to 35 years of age.Main Outcome Measures:Satisfaction with PCOS diagnosis experience, satisfaction with PCOS information received at the time of diagnosis, and current concerns about PCOS.Results:One-third or more of women reported >2 years (33.6%) and ≥3 health professionals (47.1%) before a diagnosis was established. Few were satisfied with their diagnosis experience (35.2%) or with the information they received (15.6%). Satisfaction with information received was positively associated with diagnosis satisfaction [odds ratio (OR), 7.0; 95% confidence interval (CI), 4.9 to 9.9]; seeing ≥5 health professionals (OR, 0.5; 95% CI, 0.3 to 0.8) and longer time to diagnosis (>2 years; OR, 0.4; 95% CI, 0.3 to 0.6) were negatively associated with diagnosis satisfaction (independent of time since diagnosis, age, and world region). Women’s most common concerns were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%), and infertility (44.5%).Conclusions:In the largest study of PCOS diagnosis experiences, many women reported delayed diagnosis and inadequate information. These gaps in early diagnosis, education, and support are clear opportunities for improving patient experience.In the largest international study of PCOS diagnosis experiences, delayed diagnosis and a lack of adequate consumer health information are common and associated with poor patient experience.
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Address all correspondence and requests for reprints to: Helena Teede, PhD, Monash Centre for Health Research and Implementation, Monash University, Locked Bag 29, Clayton, Victoria 3168, Australia. E-mail: helena.teede@monash.edu.
ISSN:0021-972X
1945-7197
DOI:10.1210/jc.2016-2963