kim woods

Arentz et al. BMC Women’s Health (2021) 21:107

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Perceptions and experiences of lifestyle
interventions in women with polycystic ovary
syndrome (PCOS), as a management strategy
for symptoms of PCOS
Susan Arentz1* , Caroline A. Smith1, Jason Abbott2 and Alan Bensoussan1

Background: The international clinical practice guidelines for PCOS emphasize diet and exercise as first-line man-
agement of clinical signs and symptoms. This study aimed to describe the patterns, perceptions and experiences of
lifestyle interventions for women in the community with PCOS.

Method: An electronic survey of 493 members of two PCOS consumer support groups, collected by cloud-based
Survey Monkey, described women’s types and patterns of diet and exercise, experiences and perceptions of effective-
ness. Women were recruited from the Polycystic Ovary Association of Australia (POSAA) and from the Facebook group,
PCOS University Research Group. Associations between participants perceptions of effectiveness, and diet types and
exercise patterns were assessed using logistic regression. Response bias for the POSAA group was assessed with a
continuum of resistance model.

Results: 91% of POSAA members and 311 Facebook group members aged 16–50 years responded to the survey.
Nearly all women reported adjusting their dietary and exercise practices with the aim to improve their health and/
or PCOS (82% and 73% respectively), however less than 13% reported achievement of health goals (12.2% and 8.1%
respectively). Low carbohydrate, high protein diets, and vigorous activity were associated with self-perceived effec-
tiveness (r.0.16, p < 0.01; r.0.15 p < 0.01 and r.0.2 p < 0.01 respectively). Barriers for lifestyle interventions included psy-
chosocial factors. Response bias was not assessed for the Facebook group, however self-reported PCOS aligned with
prevalence of clinical phenotypes and suggests results are generalizable to clinical populations of women with PCOS,
who are responsible for self-directing and administering lifestyle interventions to manage their PCOS.

Conclusions: Perceptions of effectiveness for lifestyle interventions by women with PCOS may be complicated by a
lack of rigorous evidence. The strength of recommendations in clinical practice guidelines may be enhanced by clini-
cal trials investigating flexible and feasible lifestyle interventions for women in the community with PCOS.

Keywords: Polycystic ovary syndrome, Healthy lifestyle, Exercise, Women’s health

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Polycystic ovary syndrome (PCOS) is the most com-
mon reproductive endocrinopathy affecting up to one
in five women of reproductive age [1, 2]. The cause of
PCOS remains unknown however increased prevalence
coincides with a global increased incidence of metabolic

Open Access

1 NICM Health Research Institute, Western Sydney University, Locked Bag
1797, Penrith, NSW 2751, Australia
Full list of author information is available at the end of the article

Page 2 of 8Arentz et al. BMC Women’s Health (2021) 21:107

syndrome. Metabolic disturbance is associated with
increased adiposity and clinically worsens menstrual
cyclicity, hyperandrogenism, ovulation rates, fertility,
maternal and neonatal outcomes and increases women’s
risks for diabetes, cardiovascular disease and cancer [2,

The international evidence based guidelines (EBG) for
the management of PCOS highlights personal lifestyle
behaviours to reduce and prevent risk factors signifi-
cantly associated with increased body weight in women
with PCOS [4]. Diet and exercise interventions aimed
at weight reduction and prevention of weight gain are
first-line management strategies due to their significant
impact on clinical outcomes, including reproductive
endocrinology and clinical signs and symptoms [3–5].
However, current evidence for lifestyle intervention for
women with PCOS is not well established. Many stud-
ies informing the evidence base are underpowered and
report high risk of bias, particularly from high attrition
[5–8]. The effectiveness of specific dietary and exercise
practices for women centred outcomes has not been
established. It has not been shown that if, and to what
degree diet and exercise performed outside the con-
fines of study intervention environments correlate with
improved health status for women with PCOS in the
community [9].

Dietary and exercise practices of women may be influ-
enced by a wide range of ecological factors including
inter and intrapersonal, environmental and psychosocial
characteristics of individuals plus levels of health literacy
and potential for self-efficacy [10–14]. Health promoting
behaviours by women with PCOS may be complicated
by a lack of evidence informing women of the benefits
of lifestyle intervention [4], and may exacerbate psycho-
logical morbidity, which has a high prevalence in women
with PCOS [15], and frustration with current medical
treatments [16, 17]. To date there are few data describ-
ing the views of women with PCOS for engagement and
optimal effectiveness of dietary and exercise strategies in
community-based environments.

This study has two aims; to describe the experiences
of women with PCOS living in the community, and to
explore their perceptions about the effectiveness of die-
tary and exercise interventions for PCOS.

The study was approved by the University of Western
Sydney Human Research and Ethics Committee H9341.
An anonymous electronic survey was undertaken to
describe the experiences of community-based women
with self-reported PCOS, and associated symptoms,
and the role of diet and exercise and other interven-
tions which may contribute to the management of PCOS

symptoms and wellbeing. Women with PCOS seeking
health support as members of two consumer support
networks, the land based Polycystic Ovary Syndrome
Association of Australia (POSAA) and the digital social
network site (SNS), Facebook, were approached and
invited to participate. Participants self-selected from
POSAA following direct email to 258 financial members
between November 2011 and September 2013. A second
sample from Facebook was generated by group mem-
bers response to an invitation to participate in the sur-
vey and a link placed on the ‘wall’ of the Facebook group
page acebo ok. Wall postings
occurred bi-monthly between February 2013 and May
2013. Included were women who self-identified as hav-
ing PCOS, with access to an electronic device and with
English language skills. All participants were members of
PCOS support networks and self-reported a prior diag-
nosis of PCOS.

Questionnaire design
A 37-item questionnaire was designed to describe the
signs and symptoms of women with PCOS and women’s
use of medical treatment and diet and exercise to man-
age PCOS. (Additional file 1). Fifteen items sought infor-
mation regarding dietary and exercise practices and
included types of diets and exercise, types and patterns
of exercise practice in terms of frequency, duration and
intensity. Moderate intensity exercise was described as
causing an increased breath and heart rate but still able
to talk. Vigorous exercise was described as causing mark-
edly increased breath and heart rate and not being able to
talk during activity. Additional questions examined bar-
riers to engagement including reasons for not partaking
or disengaging with therapeutic diet and exercise prac-
tices and questions about self-perceived achievement
of goals and satisfaction with diets and exercise. Socio-
demographic characteristics were also collected. Mul-
tiple response options were available for participants to
indicate which signs and symptoms of PCOS they were
experiencing, and the types of dietary and exercise prac-
tices used. Item three sought frequency of ten signs and
symptoms typically associated with PCOS including ‘feel-
ing depressed due to PCOS,’ with an open-ended option
for others. Frequency was reported on a six-point Likert
scale ranging from ‘all the time’ to ‘not at all.’ A cover let-
ter informed participants’ that consent was implied fol-
lowing electronic submission, and that responses could
not be withdrawn due to anonymity of the survey. The
questionnaire took 15–20  min to complete. The stability
of the questionnaire was tested on a pilot sample of eight
women including four with PCOS to review the applica-
bility and accuracy of the questionnaire.

Page 3 of 8Arentz et al. BMC Women’s Health (2021) 21:107

The electronic survey was loaded onto Survey Monkey
[18] and made available to both members of POSAA and
members of the Facebook group. A single response func-
tion was applied to each member and to devices.

Data analyses
Responses were analysed using the statistical pack-
age SPSS version 21.0 [19]. Categorical responses were
reported as percentages and proportions with 95% con-
fidence intervals. Relationships between variables were
explored using Pearson’s correlation (two tail) for para-
metric data and Spearman’s Rho correlations or Gamma
co-efficient (collapsed less than six variables) for non-
parametric measurements. Associations between percep-
tions of effectiveness (dependent variable) and type and
pattern of diet and exercise (covariates) were assessed
using logistic regression. A p value of 0.05 was consid-
ered statistically significant.

Non-response bias was assessed using a continuum of
resistance model in which late responders were viewed as
proxy non-responders [20]. Participants who responded
to the survey four months or more after the final
reminder, were classified as late responders. This method
was chosen due to the likelihood of early response by
women who found the topic interesting [21]. The impact
of non-response bias was assessed by comparing early
and late responders.

Four hundred and ninety-three participants aged
between 16–50 years responded to the survey; 235 of the
258 invited members of the POSAA group responded
(91.1%) including 53 late responders, and 311 women
replied to snowballing using the University Research
Facebook group page. No differences in demographics
or PCOS signs and symptoms were found between early
and late responders or the two consumer support groups
(POSAA and Facebook) (Additional file 2: Tables S1 and

Four hundred and thirty-four (88.0%) subjects com-
pleted all parts of the survey, with the remainder using
the skip patterns inserted into the electronic survey or
completing only part of the survey.

The demographics of participants are presented
in Table  1. Most women were aged between 25 and
34  years (n = 237, 48.1%, ± 4.41, 95%CI), were tertiary
educated (n = 323, 76.2%, ± 4.05), and employed, (335,
67.9%, ± 4.12).

Over 75% of participant’s reported being over-
weight, (n = 357, 77.3% ± 3.82). Two thirds of
responders reported experiencing a late menstrual
period (n = 304, 67.1%, ± 4.33, 95% CI) and hirsutism
(n = 327, 68.8%, ± 4.17). Over half reported infertility

(n = 248, 60.2%, ± 4.73) and insulin imbalances
(n = 251, 55.7% ± 4.58), and nearly half reported feel-
ing depressed as a result of having PCOS (n = 200,
44% ± 4.56). Women reporting a late menstrual period
(oligo/amenorrhea) were significantly more likely to
report, being very overweight (r.0.29, p < 0.01) and

Table 1 Demographic characteristics of Survey participants

N = 493

Valid % 95%


16–17 3 .7 ± 0.79
18–24 72 17.0 ± 3.58
25–29 126 29.7 ± 4.35
30–34 111 26.2 ± 4.19
35–40 71 16.7 ± 3.55
41–44 25 5.9 ± 2.24
45–50 16 3.8 ± 1.82
Missing data 69 14


Complete high School

Yes 371 87.5 ± 3.15
No 48 11.3 ± 3.01
Currently enrolled 5 1.2 ± 1.04
Missing data 69 14

Completed tertiary education

Yes 323 76.2 ± 4.05
No 55 13.0 ± 3.0
Currently enrolled at a tertiary inst 46 10.8 ± 2.95
Missing data 69 14

Total 493

Qualification from TAFE 103 20.9 ± 3.59
Private institution Diploma 70 14.2 ± 3.08
University degree 221 44.8 ± 4.39
Missing data 69 14

Ethnicity- country of birth

Australia 302 61.3 ± 4.3
Other 121 24.5 ± 2.08
Missing data 70 14.2


Home duties 117 23.7 ± 3.75
Self-employed 38 7.7 ± 2.35
Student 80 16.2 ± 3.25
Employed part time 103 20.9 ± 3.59
Employed full-time 194 39.4 ± 4.31
Other 12 ± 1.35
Private Health Insurance

Yes 275 65 ± 4.55
No 148 35 ± 4.55
Missing data 70 14.2

Page 4 of 8Arentz et al. BMC Women’s Health (2021) 21:107

infertility (r.0.45, p < 0.001) but unlikely to report feel-
ing depressed due to PCOS (r.0.08, p = 0.10). Women
reporting hirsutism were more likely to report depres-
sion (r.0.24, p < 0.01) (Table 2).

Management of PCOS
The respondents used various medical therapies
to manage PCOS (Table  3). Over sixty five percent
(± 4.21) had used the oral contraceptive pill, 62.7%
(± 4.26) had used other pharmaceuticals including

ovulation induction, hypoglycaemic and anti-androgen

Lifestyle interventions
Over 82% (± 3.36, n = 406) of respondents reported alter-
ing their dietary intake during the previous five years for
health reasons. Over 57% (± 4.37, n = 282) reported con-
suming a diet specifically to manage symptoms associ-
ated with PCOS and had tried various types of diets. The
most frequently used was the low glycaemic (GI) index
diet (50.1%, ± 4.41, n = 247), followed by the low calo-
rie diet (36.9%, ± 4.26, n = 181), low carbohydrate diet
(33.7%, ± 4.17, n = 166) and low fat diet (32.9%, ± 4.15,
n = 162).

Women were asked to indicate their reason for dieting.
Most respondents (72.7%, ± 3.93) modified their diet with
the aim to lose weight. Other reasons included maintain-
ing general health, 59% (± 4.64), to manage blood sugar
levels 37.3% (± 4.56), to improve body composition 15%
(± 3.37) and for social or religious reasons 7.4% (± 2.47).

The majority of women reported they did not fully
achieve their health goals using dietary changes. Over
thirty three percent (± 4.5 n = 140) reported they did
not achieve their weight loss goals or any positive health
changes from dietary practices. Forty six percent (± 4.78,
n = 195) reported that dietary practices had contributed
partly to positive health changes and a small number of
women (n = 51) reported fully achieving their health
goals using dietary practices (12.2%, ± 3.13).

Positive associations between types of diets and
achievement of health goals were found between the low
carbohydrate diet (r. 0.16, p < 0.01, N = 419) and the high
protein diet (r. 0.15, p < 0.01, N = 419).

Most women, (73.1%, ± 4.2, n = 313) reported regular
participation in moderate or vigorous exercise. Women
were engaged in a variety of different forms of exer-
cise, most exercisers reported practicing two or more
types (97%, ± 4.57, n = 305). Over half of participants
(61.3%, ± 3.13) were engaged in formal exercise includ-
ing supervision provided by a personal trainer, partici-
pation in a team sport or attending a gymnasium and
lifting weights, running, swimming, cycling or super-
vised classes. Over one third (37.5%, ± 4.27) of women
reported incidental activity as exercise. Other exercise
included Pilates, dance, personal trainer, tennis and team

Most respondents reported multiple reasons for exer-
cising, with 80% (± 4.45) using exercise to feel better in
themselves, 75% (± 4.79) to induce weight loss and 60%

Table 2 Self-reported correlation of PCOS signs and symptoms

**Correlation was significant at the 0.01 level (2-tailed)

*Correlation was significant at the 0.05 level (2-tailed)

cm’s: centimetres

Sig: significance

N: frequency of valid cases

Signs and symptoms Depression Waist more
cm’s than hip

Infertility Cramps

Late period

Pearson Correlation .079 .273** .450** .193**

Sig. (2-tailed) .097 < .01 < 0.01 < 0.01

N 443 440 419 398


Pearson Correlation .241** .301** .082 .003

Sig. (2-tailed) < 0.01 < 0.01 .092 .957

N 453 448 426 400


Pearson Correlation − .013 .222** .225** .079
Sig. (2-tailed) .781 < 0.01 < 0.01 .112

N 458 455 433 410

Very overweight

Pearson Correlation .019 .228** .408** .237**

Sig. (2-tailed) .690 < 0.01 < 0.01 < 0.01

N 443 440 422 395

Blood sugar/insulin imbalance

Pearson Correlation .112* .225** .691** .222**

Sig. (2-tailed) .018 < 0.01 < 0.01 < 0.01

N 449 448 426 402

Table 3 Medical interventions used by participants

Frequency % Missing N

Oral contraceptive pill 322 65.3 171 493

Pharmaceuticals: ovulation induction,
anti-androgens hypoglycaemics etc

309 62.7 184 493

Ovarian stimulation as part of an IVF

58 11.8 435 493

Surgery 49 9.9 444 493

No medical treatment 10 2 483 493

Page 5 of 8Arentz et al. BMC Women’s Health (2021) 21:107

(± 5.45) to prevent weight gain. Sixty percent of respond-
ers (± 5.45) were exercising specifically to manage their

One hundred and fifteen participants did not exercise
(26.9%, ± 4.2). Reasons for not exercising included lack
of time (n = 109), felt embarrassed (n = 93), and financial
costs (n = 52). Fifty-one cited other reasons such as fee-
ing unmotivated, depressed, and co-morbid overweight
conditions including back pain and arthritis.

Most women reported participation in both moder-
ate and vigorous exercise. Over 88% (± 3.5, n = 277) of
exercising women, regularly engaged in moderate exer-
cise, and nearly half (48.7% ± 6.04, n = 128) in vigorous
exercise. Seven women reported not doing any mod-
erate exercise at least once per month, and 88 women
(28.3%, ± 4.67) were not engaged in any vigorous exercise
at least once per month and 87 women, no vigorous exer-
cise at all.

Most women exercised two to four times per week
(42.0%, ± 5.46, n = 132). Most responders exercised mod-
erately for 15–30 min per session (46.1%, ± 5.49, n = 146,)
and just under 40% exercised vigorously for 30–60  min
(39.9%, ± 5.44, n = 134).

Nearly forty percent (39.4%, ± 5.35, n = 127) reported
non achievement of health goals with exercise. The
majority reported part achievement using exercise
(51.8%, ± 5.46, n = 166), and only eight percent (± 2.93,
n = 25) of respondents felt they had achieved their health
goals with exercise.

We found that increased frequency and duration of
exercise was significantly associated with the achieve-
ment of health goals and an inverse association between
the duration of moderate exercise and the achievement of
health goals. (Table 4).

This study highlights the views of women in the com-
munity with PCOS and describes their self-reported
dietary and exercise lifestyle behaviours and perceptions
of effectiveness. Nearly all women reported adjusting

their dietary and exercise practices with the aim to
improve their health and/or PCOS, however less than
13% reported achievement of health goals. Participants
reported a range of PCOS symptoms including being
overweight, reproductive disorders and negative emo-
tional and mental health and frequent engagement with
positive health behaviours as part of self-care manage-
ment, with the primary aims to lose weight and manage

Women with PCOS in the community have been found
to lack support and information for self-managing PCOS
symptoms using lifestyle interventions [9, 17]. In a survey
of 1385 women with PCOS, only 11.9% reported satisfac-
tion with information provided about beneficial diet and
exercise [17]. In the same study, less than 4% of partici-
pants were satisfied with information provided about the
emotional features of PCOS, with no information or sup-
port being offered in most cases [17]. Lack of information
and support for community-based women with PCOS
may have influenced the low perceptions of efficacy for
lifestyle interventions found in the present study. Wom-
en’s information needs include details about types and
patterns of safe and effective lifestyle interventions, and
mediators for success and goal achievement including the
impact of social support and influence of expectations
and experiences of lifestyle interventions [15, 22].

Views of community-based women with PCOS pre-
sented here contrast with findings of a randomized
control trial (RCT) evaluating diet and exercise on the
motivators and barriers of exercise for women with
PCOS [8]. This clinical investigation found women’s
perceptions of exercise were significantly improved
over 20  weeks in all three study arms (diet only, diet
plus aerobic exercise and diet plus aerobic and progres-
sive resistance exercises), and correlated with improved
anthropometry, health related quality of life and less
depression [8]. Greatest perceived benefits were on the
psychological outlook and social interaction subscales of
the Exercise Benefits/Barriers Scale (EBBS) (p ≤ 0.001).
Other significant findings were reduced barriers on

Table 4 Duration of exercise and self-perceptions of the achievement of health goals

**Correlation was significant at the 0.01 level (2-tailed)

*Correlation was significant at the 0.05 level (2-tailed)

Sig: significance

N: frequency of valid cases

Vigorous exercise

Moderate exercise less
than 60 min

Moderate exercise
more than 60 min

Self-perceived achievement of goals Pearson Correlation .196** .247** − .006
Sig. (2-tailed) .000 .000 .919

N 320 320 320

Page 6 of 8Arentz et al. BMC Women’s Health (2021) 21:107

subscales of exercise milieu (atmosphere), time expendi-
ture and physical exertion (p ≤ 0.003). The contrasting
findings found in the present study may be explained by
the recruitment strategy of women with PCOS from dif-
ferent populations and by differences in the nature and
structure of lifestyle interventions.

The present study recruited participants from con-
sumer support groups in order to assess the views of
women in the community, whereas recruitment to the
clinical investigation was conducted via public advertise-
ments via medical speciality clinics. Women with PCOS
seeking medical support have been shown to display dif-
ferent characteristics of PCOS compared to community-
based women [2] which may explain variable perceptions
of exercise interventions found in the present study. In
addition, the nature of the interventions provided in the
clinical trial were structured with weekly contacts, com-
pared to self-informed, self-initiated, self-administered
and self-accounted lifestyle interventions typically used
by women in the community. Although nearly two thirds
of participants reported engagement with supervised/
structured exercise, a lack of specific information about
evidence-based lifestyle recommendations for PCOS,
may have limited guidance of exercise supervisors, with
respect to the types and patterns of exercise provided,
and a lack of information may have mediated women’s
expectations and experiences of efficacy [23].

It is unclear which dietary and exercise strategies are
optimal for women with PCOS. Current recommenda-
tions based on reduced caloric intake, combined with
moderate energy expenditure, are described as being
most likely to produce sustained weight loss and favour-
able endocrine and reproductive outcomes [5, 24–27].
Women in this study reported similar optimal dietary
and exercise practices on symptoms of PCOS, with great-
est effectiveness reported for low carbohydrate and high
protein diets compared to low calorie diets. Women’s
perceptions of effective exercise practices highlighted
the importance of including vigorous activity, however
many respondents reported no engagement in any vigor-
ous activity at all. Various reasons were cited, including
time limitations, feelings of embarrassment and personal
injury. Additionally, exercise preferences of women with
PCOS may favour non-vigorous activity. A study into the
comparative exercise practices of women with and with-
out PCOS, controlled for BMI, (n = 163) showed that
women with PCOS were less likely to engage in vigorous
activity [28] and was strongly determined by personal
circumstances and characteristics.

Despite the present study finding most women’s exer-
cise activity aligned with recommendations in clinical
practice guidelines [29], the respondents perceptions of
low efficacy elucidates a gap in information [17] and a

need for guidance despite the absence of high quality evi-
dence [5]. Women in the community still need to make
decisions about patterns and types of lifestyle to manage
PCOS. Their perceived low efficacy may be complicated
by the absence of rigorous information and reflect the
trial and error process of self-directed and self-funded
searches for the most effective and feasible lifestyle inter-
ventions for their case and circumstances.

This study contributes to our understanding of women
with PCOS living in the community, and their experi-
ences using lifestyle interventions to manage symptoms
and health. This research gives voice to community-
based women with PCOS and identifies important modi-
fying factors for consideration in future clinical practice
recommendations [30]. It may also guide pragmatic
clinical trial investigations of flexible lifestyle interven-
tions, conducted in community settings with real-world
characteristics [31] in order to improve the quality of evi-
dence and strengthen recommendations of clinical prac-
tice guidelines [4].

Limitations and strengths
There are some methodological limitations of this study
including the non-response and selection bias of recruit-
ment from Facebook support groups. We were not able
to assess unsolicited invitations from group administra-
tors and response bias analyses was not possible. Women
volunteered to participate, which may have introduced
response bias with responders potentially reporting more
positive or negative experiences of PCOS and percep-
tions of lifestyle effectiveness compared to non-respond-
ers [32]. Generalizations are limited to computer literate
women with English language skills, as members of sup-
port networks and other groups of women with PCOS
may be underrepresented. The questionnaire was not val-
idated against medical records for PCOS lifestyle inter-
ventions; however, it was designed to investigate women
with PCOS in the community and their perceptions,
usage and experiences of lifestyle interventions, which
may not coincide with the views of clinical groups. PCOS
and physical characteristics including BMI and anthro-
pometric measurements were self-reported and at risk of
inaccuracy, however a similar symptom profile to clinical
populations [1, 15, 33] was described, and these results
may be generalisable to women with medically diag-
nosed PCOS, living in the community. Genetic analyses
of PCOS susceptibility has demonstrated consistency
between woman’s self-reports of the condition and rigor-
ous diagnoses [34, 35].

Page 7 of 8Arentz et al. BMC Women’s Health (2021) 21:107

Women in the community with PCOS report frequent
engagement in a variety of dietary and exercise practices
according to the clinical practice guidelines, and they
perceive their health goals are partially met. Self-per-
ceived lack of efficacy for dietary and exercise interven-
tions may be due to the lack of high-quality evidence of …

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