C LIN I CA L R ES E AR CH A RT IC LE

Delayed Diagnosis and a Lack of Information

Associated With Dissatisfaction in Women With
Polycystic Ovary Syndrome

Melanie Gibson-Helm,1 Helena Teede,1,2 Andrea Dunaif,3 and Anuja Dokras4

1
Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine,

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Monash University, Clayton, Victoria 3168, Australia; 2Monash Partners Academic Health Science Centre,
Clayton, Victoria 3168, Australia; 3Feinberg School of Medicine, Northwestern University, Chicago, Illinois
60611; and 4Division of Reproductive Endocrinology, PENN PCOS Center, University of Pennsylvania,
Philadelphia, Pennsylvania 19104

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. (J Clin Endocrinol Metab 102: 604–612, 2017)

P olycystic ovary syndrome (PCOS) is an endocrine

condition affecting 9% to 18% of reproductive-aged
women (1–3). Diagnosis commonly requires at least 2 of
oligo/amenorrhea, with exclusion of other etiologies (4).
Despite the high prevalence, PCOS is an underrecognized
condition, and many women remain undiagnosed (1).
the 3 following features: polycystic ovaries on ultra- PCOS affects health and well-being over the life span
sound, biochemical/clinical hyperandrogenism, and (5, 6). It is the most common cause of anovulatory

ISSN Print 0021-972X ISSN Online 1945-7197 Abbreviations: CI, confidence interval; OR, odds ratio; PCOS, polycystic ovary syndrome.
Printed in USA
Copyright © 2017 by the Endocrine Society
Received 12 August 2016. Accepted 12 October 2016.
First Published Online 1 December 2016

604 press.endocrine.org/journal/jcem J Clin Endocrinol Metab, February 2017, 102(2):604–612 doi: 10.1210/jc.2016-2963
doi: 10.1210/jc.2016-2963 press.endocrine.org/journal/jcem 605

infertility (7), and women with PCOS have greater prev- was developed with input from a multidisciplinary expert advi-
alence type 2 diabetes (8), risk factors for cardiovascular sory group and piloted with women with PCOS (14). The results
from the previous study, national forums with women, clinicians,
disease (8), and symptoms of anxiety and depression
and academics (20), and experiences of international experts
(9, 10). PCOS is exacerbated by obesity (11), and lifestyle informed the refined questionnaire used here. It included de-
management (weight management or loss, healthy diet, and mographics, PCOS diagnosis experience, information provided at
exercise) and the oral contraceptive pill are first-line diagnosis, current concerns about PCOS features, and support
treatments (12, 13). needs (Supplemental File 1). No question was compulsory. Reponses
A previous Australian survey highlighted that PCOS were collected using SurveyMethods software (SurveyMethods,
Inc., Allen, TX) and then exported and analyzed by the authors.
diagnosis is often delayed, involves many health pro-
fessionals, and leaves women with unmet information
Variables and statistical methods

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needs (14). These experiences may have long-term con- Statistical analysis was performed with Stata software ver-
sequences, with a reported association between the length sion 12.1 (StataCorp, College Station, TX). Categorical data are
of time to receive a PCOS diagnosis and both anxiety and presented as count and proportions. A P value ,0.05 was
depression symptoms (15). Diagnosis experience could considered statistically significant.
also affect self-management and the ability to improve
lifestyle, the information sources that women access, and Logistic regression analyses: diagnosis experience
participation in regular screening for metabolic compli- Univariable logistic regression analyses generated crude
odds ratios (ORs) and 95% confidence intervals (CIs) for as-
cations (16, 17). Despite these potential impacts, there sociations between world region of residence [North America
have been few comprehensive studies investigating di- (reference category), Europe, and other] and aspects of PCOS
agnosis experience. Information needs have been inves- diagnosis experience. These included time since diagnosis, time
tigated in PCOS (16–19), but studies have been small or from first seeing a health professional about PCOS symptoms to
limited in scope. when a diagnosis was established, number of health professionals
seen before receiving a diagnosis, satisfaction with their diagnosis
This study aimed to investigate women’s diagnosis
experience, and satisfaction with the information received about
experiences, information provided, main concerns about PCOS at the time of diagnosis.
PCOS, and support needs in a large group of women with Univariable logistic regression analyses then tested for asso-
PCOS, primarily in North America and Europe. The findings ciations between overall satisfaction with diagnosis experience
will inform an international initiative to improve diagnosis and potential contributors. These included number of health
and education to better meet women’s needs and optimize professionals seen [1 to 2 (reference category), 3 to 4, or $5], time
to diagnosis [within 6 months (reference category), within
early engagement with evidence-based management. This 12 months, within 2 years, or .2 years], satisfaction with in-
international approach builds on prior research about PCOS formation provided [dissatisfied or indifferent (reference cate-
diagnosis experiences in Australia and investigates how gory) or satisfied], time since diagnosis [#1 year (reference
women’s needs may differ in different regions. category), 1 to 5 years, 5 to 10 years, or .10 years], age [18 to
25 years, 26 to 35 years (reference category), 36 to 45 years, or
.45 years], and world region of residence [North America
Methods (reference category), Europe, or other]. These 6 variables were
then included in a multivariable logistic regression analysis of
Ethics approval overall satisfaction with diagnosis experience.
This study was approved by the University of Pennsylvania
Institutional Review Board (protocol number: 822252). Partici- Logistic regression analyses: information provision
pation was voluntary and anonymous. Completion of the survey at diagnosis
was taken as consent to participate in the study.
Univariable logistic regression analyses were conducted to
test for associations between world region of residence [North
Study design, setting, and participants America (reference category), Europe, or other] and receiving
In this cross-sectional study, a community sample of women information about particular topics at the time of diagnosis,
were asked to complete an online questionnaire in 2015 and and satisfaction with received information. Topics included
2016. The questionnaire was disseminated via the Web sites of lifestyle management, medical therapy, long-term complica-
the 2 largest PCOS support organizations worldwide: PCOS tions, and emotional support and counseling. Multivariable
Challenge (United States) and Verity (United Kingdom). The link logistic regression analyses then adjusted for age and time since
to the online questionnaire was accessible to Web site visitors, diagnosis.
e-mailed to women on PCOS support organization mailing lists,
and promoted through social media. Eligibility criteria included Logistic regression analyses: current concerns about
age $18 years and a prior diagnosis of PCOS made by a doctor. PCOS
Univariable logistic regression analyses assessed associations
Tools between the leading current concerns (selected by $10% of
This questionnaire was adapted from a PCOS questionnaire participants) or preferred types of support, and age or world
previously used in published research (14). The original questionnaire region.
606 Gibson-Helm et al PCOS Diagnosis Experience and Support Needs J Clin Endocrinol Metab, February 2017, 102(2):604–612

Results Table 1. Demographic Characteristics of

Participants: Women With PCOS
Participation and demographics
A total of 1550 questionnaire responses were received. Demographic characteristic No. of Women (%)
Of these, 165 were excluded: 1 was ,18 years of age, 67 Age, y (n = 1381)
had not been diagnosed with PCOS by a doctor, and 97 18–25 190 (13.8)
26–35 705 (51.0)
had completed less than one-half of the questionnaire. The
36–45 390 (28.2)
remaining 1385 women were born in 48 different coun- .45 96 (6.9)
tries and lived in 32 different countries (Table 1). Ap- World region of birth (n = 1382)
proximately one-half of the participants were aged 26 to North Americaa 689 (49.9)
Europeb 568 (41.1)
35 years (Table 1).

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Oceaniac 39 (2.8)
Asiad 37 (2.7)
Diagnosis experience Central, Latin, and South America and 32 (2.3)
Nearly one-half of the participants saw $3 health Caribbeane
Africaf 17 (1.2)
professionals before a PCOS diagnosis was established, World region of residence (n = 1382)
and for one-third this took .2 years (Table 2). Only North Americaa (United States: n = 693; 732 (53.0)
35.2% were satisfied with their diagnosis experience, Canada: n = 39)
Europeg 583 (42.2)
and only 15.6% were satisfied with the information
Otherh 67 (4.8)
about PCOS provided at the time of diagnosis (Table 2).
a
United States of America and Canada.
Univariable logistic regression analysis: diagnosis b
Bosnia and Herzegovina, Czech Republic, Denmark, Finland, Germany,
experience Greece, Iceland, Ireland, Italy, Lithuania, Malta, Norway, Poland, Por-
tugal, Romania, Slovakia, Spain, Sweden, and United Kingdom of Great
There were statistically significant associations between Britain and Northern Ireland.
world region and some diagnosis experience variables. c
Australia and New Zealand.
Women in Europe were more likely to have been diagnosed d
Azerbaijan, China, India, Iran, Japan, Jordan, Lebanon, Malaysia, Phil-
with PCOS .5 years ago than women in North America ippines, South Korea, Sri Lanka, Thailand, Turkey, United Arab Emirates,
(OR, 1.4; 95% CI, 1.1 to 1.8; P , 0.01). They were also less and Yemen.
e
likely to have seen $3 health professionals before a di- Brazil, Chile, Colombia, Cuba, Dominican Republic, Grenada, Haiti,
Jamaica, Mexico, Panama, Peru, Puerto Rico, and Venezuela.
agnosis was established (OR, 0.8; 95% CI, 0.6 to 0.9; P = f
Algeria, Egypt, Cote d’Ivoire, Ghana, Nigeria, Rwanda, Somalia, South
0.02). No statistically significant associations were noted
Africa, and Zambia.
between world region of residence and overall satisfaction g
United Kingdom of Great Britain and Northern Ireland (n = 517),
with diagnosis experience, time to diagnosis, or satisfaction Southern Europe (n = 37), Northern Europe (n = 19), Western Europe (n =
with information provided about PCOS at diagnosis. 8), and Eastern Europe (n = 2).
Overall, seeing $3 health professionals was negatively h
Australia (n = 35), Africa (n = 10), Southern Asia (n = 7), Western Asia
associated with diagnosis satisfaction (3 to 4 health (n = 6), Eastern and Southeastern Asia (n = 5), and Central, Latin, and
South America and Caribbean (n = 4).
professionals: OR, 0.6; 95% CI, 0.5 to 0.8; P , 0.01; $5
health professionals: OR, 0.4; 95% CI, 0.3 to 0.6; P ,
0.01). A time to diagnosis of .6 months was also neg-
95% CI, 4.9 to 9.9; P , 0.01). Seeing $5 health professionals
atively associated with diagnosis satisfaction (12 months:
(OR, 0.5; 95% CI, 0.3 to 0.8; P = 0.01) and time to
OR, 0.5; 95% CI, 0.3 to 0.7; P , 0.01; 2 years: OR, 0.5;
diagnosis .6 months (12 months: OR, 0.6; 95% CI, 0.4 to
95% CI, 0.3 to 0.7; P , 0.01; .2 years: OR, 0.4; 95% CI,
0.9; P = 0.01; 2 years: OR, 0.5; 95% CI, 0.3 to 0.8; P = 0.01;
0.3 to 0.5; P , 0.01). Satisfaction with information re-
.2 years: OR, 0.4; 95% CI, 0.3 to 0.6; P , 0.01) were
ceived about PCOS was positively associated with di-
negatively associated with diagnosis satisfaction. These
agnosis satisfaction (OR, 6.9; 95% CI, 5.0 to 9.6;
associations were independent of age, world region,
P , 0.01).
and time since diagnosis.
Multivariable logistic regression analysis: diagnosis
experience Information provision at diagnosis
The multivariable model for satisfaction with diagnosis Less than one-quarter were satisfied with PCOS-
experience included time to diagnosis, number of health related information given at diagnosis about lifestyle
professionals seen, satisfaction with information received, management and medical therapy (Table 2). Over one-
time since diagnosis, current age, and world region. In this half reported not receiving any information about long-
model, satisfaction with information received was posi- term PCOS complications or emotional support and
tively associated with diagnosis satisfaction (OR, 7.0; counseling (Table 2).
doi: 10.1210/jc.2016-2963 press.endocrine.org/journal/jcem 607

Table 2. PCOS Diagnosis Experience

Perceptions of PCOS Diagnosis Experience Overall North America Europe Other Regions
Time since diagnosis, y
#1.0 162 (11.8) 103 (14.2) 47 (8.1) 11 (16.4)
1.1–5.0 338 (24.6) 183 (25.2) 133 (23.0) 22 (32.8)
5.1–10.0 353 (25.7) 181 (25.0) 152 (26.3) 20 (29.8)
.10.0 519 (37.8) 258 (35.6) 246 (42.6) 14 (20.9)
Time until diagnosis
Within 6 mo 595 (43.4) 294 (40.5) 266 (45.9) 34 (53.1)
Within 12 mo 183 (13.3) 86 (11.9) 88 (15.2) 9 (14.1)
Within 2 y 133 (9.7) 74 (10.2) 55 (9.5) 3 (4.7)

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.2 y 461 (33.6) 271 (37.4) 171 (29.5) 18 (28.1)
No. of health professionals seen before diagnosis
1–2 727 (52.9) 364 (50.0) 327 (56.8) 34 (51.5)
3–4 476 (34.7) 272 (37.4) 178 (30.9) 25 (37.9)
$5 170 (12.4) 92 (12.6) 71 (12.3) 7 (10.6)
Satisfaction with diagnosis experience
Dissatisfied 585 (42.4) 301 (41.2) 255 (44.0) 28 (41.8)
Neither satisfied nor dissatisfied 310 (22.4) 172 (23.5) 122 (21.0) 14 (20.9)
Satisfied 486 (35.2) 258 (35.3) 203 (35.0) 25 (37.3)
Satisfaction with information given about PCOS
Dissatisfied or indifferent 1165 (84.4) 606 (83.0) 505 (86.9) 51 (76.1)
Satisfied 216 (15.6) 124 (17.0) 76 (13.1) 16 (23.9)
Satisfaction with information given about
lifestyle management
Dissatisfied or indifferent 594 (43.0) 316 (43.2) 250 (43.1) 27 (40.3)
Satisfied 164 (11.9) 95 (13.0) 55 (9.5) 14 (20.9)
This information was not mentioned 623 (45.1) 320 (43.8) 275 (47.4) 26 (38.8)
Satisfaction with information given about
medical therapy
Dissatisfied or indifferent 740 (53.7) 406 (55.7) 302 (52.2) 31 (46.3)
Satisfied 235 (17.0) 141 (19.3) 74 (12.8) 19 (28.4)
This information was not mentioned 403 (29.2) 182 (25.0) 203 (35.1) 17 (25.4)
Satisfaction with information about long-term
complications
Dissatisfied or indifferent 546 (39.6) 299 (41.0) 225 (38.3) 20 (29.8)
Satisfied 109 (7.9) 68 (9.3) 30 (5.2) 11 (16.4)
This information was not mentioned 723 (52.5) 363 (49.7) 323 (55.9) 36 (53.7)
Satisfaction with emotional support and counseling
after diagnosis
Dissatisfied or indifferent 478 (34.7) 275 (37.6) 184 (31.8) 17 (25.8)
Satisfied 47 (3.4) 30 (4.1) 10 (1.7) 7 (10.6)
This information was not mentioned 853 (61.9) 426 (58.3) 384 (66.4) 42 (63.6)
Values are n (%).

Regression analysis: information provision at After adjusting for current age and time since diagnosis,
diagnosis women in Europe were less likely to report receiving in-
Univariable logistic regression analyses found that formation about medical therapy (OR, 0.6; 95% CI, 0.5 to
women in Europe were less likely to report receiving in- 0.8; P , 0.01) or emotional support and counseling (OR,
formation about medical therapy (OR, 0.6; 95% CI, 0.5 to 0.7; 95% CI, 0.6 to 0.9; P = 0.01) than women in North
0.8; P , 0.01), long-term complications (OR, 0.8; 95% CI, America. Women in Europe were also less likely to be
0.6 to 1.0; P = 0.03), and emotional support (OR, 0.7; 95% satisfied with information about long-term complications
CI, 0.6 to 0.9; P , 0.01) than women in North America. (OR, 0.6; 95% CI, 0.4 to 1.0; P = 0.03). Women in other
They were also less likely to be satisfied with information world regions were more likely to be satisfied with emo-
provided about medical therapy (OR, 0.7; 95% CI, 0.5 to tional support (OR, 3.8; 95% CI, 1.3 to 10.7; P = 0.01)
1.0; P = 0.03) and long-term complications (OR, 0.6; 95% than women in North America.
CI, 0.4 to 0.9; P = 0.02). Women in other world regions
were more likely to be satisfied with information about Key concerns about PCOS
long-term complications (OR, 2.4; 95% CI, 1.1 to 5.3; P = Women were asked to select “the four key clinical fea-
0.03) and emotional support (OR, 3.8; 95% CI, 1.4 to 9.8; tures of PCOS that are most important to you.” Overall,
P = 0.01) than women in North America. difficulty losing weight, irregular menstrual cycles, infertility,
608 Gibson-Helm et al PCOS Diagnosis Experience and Support Needs J Clin Endocrinol Metab, February 2017, 102(2):604–612

and excess hair growth were the most commonly selected

features (Fig. 1).

Univariable logistic regression analysis: key

concerns, age, and world region
Compared with women aged 26 to 35 years, women
aged 18 to 25 years were more likely to identify irregular
cycles and ovarian cysts as key concerns and less likely to
identify insulin resistance (Table 3). Women aged 36 to
45 years were more likely to identify excess hair growth,

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increased weight gain, insulin resistance, and increased
risk of metabolic complications as key concerns than
women aged 26 to 35 years. They were also less likely to
identify reproductive concerns (Table 3). Women aged
.45 years were more likely to identify insulin resistance and
increased risk of metabolic complications as key concerns
and less likely to identify reproductive concerns or acne Figure 1. Key clinical features of PCOS of most importance to
(Table 3). women (n = 1379). Increased metabolic risk included gestational
diabetes, type 2 diabetes, and cardiovascular disease risk factors.
Compared with women living in North America,
Other answer options included body image dissatisfaction (8.3%),
women living in Europe were more likely to identify reduced quality of life (7.1%), premenstrual syndrome (3.4%),
anxiety or depression and clinical hyperandrogenism as endometrial cancer (3.0%), sleep apnea and snoring (2.8%), fatty
key concerns and less likely to identify difficulty losing liver (2.8%), improvement of symptoms after weight loss (2.6%),
and improvement of symptoms with exercise (1.0%).
weight, hormone imbalance/excess male-type hormones,
and insulin resistance (Table 3).
or with the information provided at the time of diagnosis.
Support needs The leading concerns that women had about PCOS were
Participants were asked the following: “How can we difficulty losing weight, irregular menstrual cycles, infer-
best support women with PCOS?” Overall, 90.3% of tility, and hirsutism. Differences were noted across age groups
women (1134/1256) selected “Provide broadly avail- and world regions for some concerns. Overall, women were
able educational materials,” 70.1% (881/1256) selected in favor of all suggested modes of support.
“Support and present at patient forums and workshops,”
65.0% (816/1256) selected “Maintain a consumer Diagnosis experience
website,” and 59.9% (753/1256) selected “Send a regular Establishing the diagnosis of PCOS involved $3
email on PCOS.” Women in Europe were less likely to health professionals and took at least a year for many
select broad education material (OR, 0.6; 95% CI, 0.4 to women in each world region. Across different world
0.9; P = 0.01), presentations at patient forums (OR, 0.5; regions, few women were satisfied with the diagnosis
95% CI, 0.4 to 0.7; P , 0.01), or a consumer Web site experience, confirming previous Australian findings (14).
(OR, 0.6; 95% CI, 0.5 to 0.8; P , 0.01) than women in Our results are also consistent with qualitative research
North America. Women aged 18 to 25 years were less from the United Kingdom and Australia, reporting
likely to select a consumer Web site (OR, 0.5; 95% CI, 0.4 frustration at delayed PCOS diagnosis (17, 21). Here we
to 0.8; P , 0.01) than women aged 26 to 35 years. Among present knowledge about contributors to poor diagnosis
the 14.1% (177/1256) that selected “other,” the most experience. Irrespective of world region and current age,
commonly suggested support was health professional ed- a longer time to diagnosis and a greater number of health
ucation regarding PCOS. professionals seen were negatively associated with diag-
nosis satisfaction, whereas satisfaction with information
provided was positively associated with diagnosis satis-
Discussion
faction. The significance for women’s well-being is sug-
Summary of findings gested by the importance and relief that women attribute to
In this large, international study of PCOS diagnosis receiving a diagnosis (16, 17) and by a negative association
experiences, women reported that receiving a diagnosis of between time to diagnosis and psychological well-being (15).
PCOS required several months to years and consultations There are many possible reasons for delayed diagnosis
with multiple health professionals. In all world regions, (22). There is no single diagnostic test, different sets of
very few women were satisfied with their diagnosis experience diagnostic criteria are still used, individual diagnostic
doi: 10.1210/jc.2016-2963 press.endocrine.org/journal/jcem 609

Table 3. Associations Between Key Concerns About PCOS and Age or World Region
World Region: World Region:
Key Concern Age 18–25 y Age 36–45 y Age >45 y Europe Other
No. of women 1375 1376
Reference category 26–35 y North America
Difficulty losing weight 1.0 (0.7–1.4) 1.1 (0.9–1.4) 1.3 (0.8–2.0) 0.7a (0.6–0.9) 0.8 (0.5–1.3)
Irregular cycles 1.5b (1.1–2.0) 0.6a (0.5–0.8) 0.2c (0.1–0.3) 0.9 (0.7–1.1) 2.6a (1.5–4.5)
Infertility 0.8 (0.5–1.1) 0.6c (0.4–0.7) 0.3c (0.2–0.4) 0.9 (0.7–1.1) 1.1 (0.6–1.8)
Excess hair growth 0.9 (0.6–1.3) 1.4a (1.1–1.8) 1.5 (1.0–2.3) 1.7c (1.3–2.1) 0.9 (0.5–1.5)
Hormone imbalance/excess male-type 0.7 (0.5–1.0) 1.0 (0.7–1.2) 0.7 (0.4–1.1) 0.6c (0.5–0.7) 0.8 (0.5–1.4)
hormones

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Increased tendency for weight gain 1.0 (0.7–1.4) 1.3b (1.0–1.7) 1.5 (0.9–2.3) 1.1 (0.8–1.3) 0.9 (0.5–1.6)
Insulin resistance 0.6b (0.4–0.9) 1.4b (1.1–1.8) 1.7b (1.1–2.6) 0.4c (0.3–0.5) 0.7 (0.4–1.3)
Anxiety/depression 1.3 (0.9–1.8) 0.8 (0.6–1.1) 1.1 (0.7–1.8) 1.5c (1.2–2.0) 1.4 (0.8–2.5)
Increased metabolic risk 1.0 (0.6–1.7) 1.6b (1.1–2.2) 3.6c (2.2–5.8) 1.0 (0.7–1.3) 0.9 (0.4–1.9)
Acne 1.0 (0.6–1.6) 0.8 (0.5–1.2) 0.4b (0.1–1.0) 2.4c (1.7–3.5) 2.2b (1.1–4.6)
Cysts on ovaries 1.6b (1.0–2.5) 0.8 (0.5–1.2) 0.5 (0.2–1.2) 0.9 (0.6–1.3) 1.9 (1.0–3.7)
Pregnancy complications 0.8 (0.5–1.4) 0.4c (0.3–0.7) 0.3a (0.1–0.7) 1.1 (0.7–1.5) 1.1 (0.5–2.5)
Scalp hair loss 0.7 (0.4–1.2) 1.2 (0.8–1.8) 1.2 (0.6–2.3) 0.7 (0.5–1.1) 1.3 (0.7–2.7)
Data presented as ORs (95% CIs).
a
P , 0.01.
b
P , 0.05.
c
P , 0.001.

criteria lack clarity, and exclusion of other etiologies is weight gain prevention programs are likely to require fewer
needed to establish the diagnosis of PCOS (4, 23, 24). resources than weight loss programs (31). Also from a re-
Ovarian ultrasound examination may be a perceived source allocation perspective, the financial costs related to
barrier to patient evaluation for PCOS in the primary care diagnosis of PCOS are only a small fraction (2%) of the total
community; however, an accurate diagnosis of PCOS can costs associated with comprehensive care for PCOS in the
be made without ovarian ultrasound if hyperandrogenism United States (32).
and menstrual irregularity are present (4, 23). Variations in The reported delays in diagnosis suggest missed oppor-
PCOS features because of ethnic origin, genetic factors, and tunities to optimize treatment, improve quality of life, and
environmental factors may also contribute to delayed di- prevent weight gain. We suggest that greater community and
agnosis (25). PCOS is difficult to diagnose in adolescence clinician awareness about the full range of PCOS features is
because PCOS features can be similar to normal pubertal needed internationally to facilitate early diagnosis.
development (26). Adolescents and women may seek care
for their presenting symptoms from different disciplines Information provision at diagnosis
(e.g., dermatologist for hirsutism and acne, gynecologist for Few women were satisfied with information about
irregular menses, psychologist for depression), and if a PCOS given at diagnosis, including on lifestyle manage-
woman’s care is not coordinated, the accurate diagnosis of ment and medical therapy. Additionally, over one-half
PCOS may not be made (22). Given these challenges, of the women reported not receiving information about
comprehensive care for PCOS in a multidisciplinary setting long-term complications or emotional support/counseling.
is widely advocated, but not received by most women Women in Europe were particularly likely to report a lack
(12, 22, 27). of information provision. However, we report the desire for
Timely diagnosis enables early interventions for acne, good-quality information regarding the full range of PCOS
hirsutism, menstrual irregularity, anxiety, depression, features and comorbidities at the time of diagnosis for
and provision of counseling regarding future fertility. women around the world. These findings are supported by
Because quality of life is linked to the clinical features of previous research from the United States, United Kingdom,
PCOS (28), early diagnosis and intervention are important. and Australia reporting women’s desire for more infor-
Timely diagnosis is also important for engaging women in mation across the full range of PCOS features (33). This
lifestyle management early in the life course to prevent desire for information at diagnosis suggests an opportune
weight gain, obesity, and related metabolic complications. time to initiate behavior change, with enhanced knowledge
Prevention of weight gain is recommended in PCOS position of PCOS associated with increased engagement with life-
statements and guidelines (12, 29) and is more feasible at the style management (16) and better quality information
individual level than weight loss (30). At the systems level, about PCOS associated with better quality of life (19).
610 Gibson-Helm et al PCOS Diagnosis Experience and Support Needs J Clin Endocrinol Metab, February 2017, 102(2):604–612

Women report gaining some or most of their information likely to be beneficial for engagement in lifestyle management
about PCOS from specialists and the Internet (18, 19, 33) and preventive strategies. In particular, previous reports
and that the quality of available PCOS information varies suggest that online support groups help women to build
(17, 19, 33). Professional societies in Australia, North confidence in communicating with health professionals and
America, and Europe produce freely available PCOS infor- improving self-management (37). Our findings support
mation sheets for patients; however, the findings presented prior recommendations to provide women with a set of
here suggest these are underused by health professionals. resources at the time of diagnosis that includes information
Investigating health professional awareness of accessible on PCOS features and management, contact details of a
resources and practices regarding PCOS consumer infor- PCOS support group, and a list of Web sites that contain
mation could identify barriers to optimal information dis- good-quality, evidence-based information (17).

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semination. Content or format of available resources may
also not adequately address women’s concerns about PCOS. Limitations and strengths
Clearly codeveloped information for women covering the The diagnosis of PCOS in our survey participants was
diversity of PCOS features is needed internationally. based on self-reported medical diagnosis only, and we
did not attempt to identify specific PCOS phenotypes.
Key concerns about PCOS However, recent genetic analyses have found the same
Women identified difficulty losing weight, irregular PCOS susceptibility loci in self-reported and rigorously
menstrual cycles, infertility, and hirsutism as their 4 key diagnosed women with PCOS (38, 39). The questionnaire
concerns about PCOS. This finding is consistent with pre- has not been validated against women’s medical records
vious research (16, 18, 33) and with the domains of the relating to diagnosis because it is designed to investigate
PCOS health-related quality of life questionnaire (34). Our the perceived experience and is not an audit tool. Recall
study is an international study in this area and reports as- bias is possible because women were asked about events
sociations between concerns, age, and world region. Con- that, for some participants, occurred a number of years
cerns about weight management also once again highlight ago. However, regression analyses relating to diagnosis
the need for health professionals to deal with lifestyle and experience were adjusted for time since diagnosis. Selection
excess weight management. Concerns with reproductive and bias is possible, and the sample may not be representative of
metabolic features reflect the different clinical implications of the general population of women with PCOS. The ques-
PCOS across the life course and the importance of un- tionnaire was only available in English and on 2 English
derstanding PCOS as a long-term, multisystem condition. language Web sites. This will have limited the participation
Clinicians need to ensure that personalized histories elicit of women from non-English speaking backgrounds. Lim-
individual concerns to guide comprehensive care. ited conclusions can be drawn regarding the other world
Associations were also noted between world regions and regions group because it is a small and heterogeneous
concerns about PCOS. These observations may reflect dif- sample. The data are presented here for completeness, but
ferences in symptom experience in different cultures or eth- we note it is largely consistent with the North American and
nicities, differences in obesity prevalence, availability of local European data and with previous research (14). Research
consumer education resources, or health professional knowl- using translated versions of the questionnaire is underway
edge of PCOS. For example, women in Europe were less likely to better understand diagnosis experience in culturally and
to have concerns about difficulties losing weight and insulin linguistically diverse groups of women. Despite these
resistance than women in North America, likely related to limitations, this is the largest and most comprehensive
prevalent overweight, obesity, and diabetes in the United study to specifically explore the PCOS diagnosis experience
States (35, 36). Women in Europe were more likely to be and related issues. Additional strengths include its in-
concerned about clinical hyperandrogenism and anxiety or ternationally recruited, community-based sample, which
depression. This is in addition to reporting receiving less in- enabled multivariable regression analysis to somewhat take
formation about medical therapy and emotional support at into account differences in health care system organization
diagnosis. Evidence-based PCOS resources for consumers and and cultural differences between North America and Europe.
health professionals should be tailored to different geographic This broad investigation provides a foundation for further
regions and should address the gaps previously identified. research to investigate the contributors to, and impact of,
diagnosis experience in specific countries.
Support needs
Women indicated that they wish to be supported in a Conclusions
range of ways: broadly available educational material, patient
forums and workshops, and Internet-based information. In the largest and only international study of PCOS di-
Supporting women through a range of modalities is also agnosis experiences, delayed diagnosis is common and
doi: 10.1210/jc.2016-2963 press.endocrine.org/journal/jcem 611

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