Chinese Medical Journal 2014;127 (18) 3309

Review article
Value of qualitative research in polycystic ovary syndrome
Ma Hongxia, Liang Huiling, Gao Jingshu, Ma Hongli, Liu Jianping, Ng Hungyu Ernest, Billhult Annika,
Stener-Victorin Elisabet, Mu Xin and Wu Xiaoke

Keywords: polycystic ovary syndrome; quantitative research; qualitative research

Objective This article aims to introduce the benefits of qualitative research and to discuss how such research can be
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applied to the study of polycystic ovary syndrome (PCOS).

Data sources Relevant articles were published in English as of May 2013 from Pubmed. Terms “polycystic ovary
syndrome/PCOS, qualitative research and methodology” were used for searching.
Study selection Articles studying PCOS with qualitative methods were reviewed. Articles associated with the use of
qualitative research in clinical research were cited.
Results Six qualitative studies related to PCOS were found in the literature search. These studies addressed different
aspects in PCOS women including their womanhood, lived experience, information need, and experience of treatment with
acupuncture. Five of these six studies used phenomenology as guiding theory.
Conclusion Quantitative research has been the dominant approach in the field so far, qualitative research is relevant to
the advancement of PCOS.
Chin Med J 2014;127 (18): 3309-3315

P olycystic ovary syndrome (PCOS) is a common

endocrine disorder with variable presentations.
Typical symptoms include anovulation/oligoovulation,
hyperandrogenism, excessive hair growth, acne, male-
pattern baldness, and polycystic ovaries. PCOS is also
related to metabolic disturbances, including obesity, insulin
resistance, type-2 diabetes, and cardiovascular disease.1,2
Researchers have recently begun to focus on health-related
quality of life (HRQoL) issues in women with PCOS. A
meta-analysis of 423 patients and 285 controls from five
studies that used the Short Form 36 (SF-36) questionnaire
showed that women with PCOS scored lower in each
dimension of the SF-36 – especially in the emotional role
function dimension – compared with healthy controls.3,4
Another study using the SF-36 showed that HRQoL
is poorer in women with PCOS even when compared
to women with other serious health conditions. 5 The
main symptoms of PCOS, such as infertility, menstrual
dysfunctions, hirsutism, and obesity can, by themselves,
cause increased psychosocial stress. Although most
clinicians recognize that the score on the questionnaires
is low and that HRQoL is poor in women with PCOS,
there has been a paucity of research that focuses on the
psychosocial aspects of living with this syndrome. Thus we
believe that further qualitative research is needed to better
understand the psychosocial distress that can be caused by
PCOS.6,7
What appears to matter the most to women with PCOS is
how well they are able to function and how they feel about
their day-to-day lives as individuals.7 Understanding the
patients’ lives, experiences, and concerns is important to
improving the quality and delivery of healthcare services.
Quantitative research methods, however, might not provide
adequate information in these areas. Thus, it has become
increasingly more important to use qualitative approaches
to understand the significant processes and the meanings
experienced by women with PCOS.8
Only six qualitative studies related to PCOS were found in
a literature search as of May 2013 (Table 1). These studies
addressed different aspects in PCOS women including
their womanhood, lived experience, information need, and
experience of treatment with acupuncture. The theory used
in these studies was singular since five of these six studies
used phenomenology. The purpose of this paper, therefore,
is to introduce the benefits of qualitative research methods
DOI: 10.3760/cma.j.issn.0366-6999.20140625
Department of Traditional Chinese Medicine, First Affiliated Hospital
of Guangzhou Medical College, Guangzhou, Guangdong 510120,
China (Ma HX)
Department of Obstetrics and Gynecology, National Key Discipline
and Clinical Base, Heilongjiang University of Chinese Medicine,
Harbin, Heilongjiang 150040, China (Liang HL, Gao JS, Ma HL, Mu
X and Wu XK)
School of Preclinical Medicine, Beijing University of Chinese
Medicine, Beijing 100029, China (Liu JP)
Department of Obstetrics & Gynecology, the University of Hong
Kong, Hong Kong, China (Ng HYE)
Research and Development Unit, Primary Health Care, Västra
Götalandsregionen, Borås, Sweden (Billhult A)
Institute of Neuroscience and Physiology, Department of Physiology,
Sahlgrenska Academy, University of Gothenburg, Gothenburg,
Sweden (Stener-Victorin E)
Correspondence to: Dr. Wu Xiaoke, Department of Obstetrics and
Gynecology, National Key Discipline and Clinical Base, Heilongjiang
University of Chinese Medicine, Harbin, Heilongjiang 150040, China
(Tel: 86-13796025599. Email: xiaokewu2002@vip.sina.com)
Ma Hongxia and Liang Huiling contributed equally to this work.
The authors have no conflicts of interests in this article.
3310
Table 1. Qualitative articles concerning PCOS
Article title (reference number) Theory
The thief of womanhood’: women’s Phenomenology
experience of polycystic ovarian syndrome (8)
The lived experience of women diagnosed Phenomenology
with polycystic ovary syndrome (7)
The information needs of women diagnosed Not reported
with Polycystic Ovarian Syndrome –
implications for treatment and health
outcomes (57)
Managing Polycystic Ovary Syndrome: what Phenomenology
our patients are telling us (58)
Young women's experiences living with Phenomenology
Polycystic Ovary Syndrome (43)
Acupuncture with manual and low frequency Phenomenology
electrical stimulation as experienced by
women with polycystic ovary syndrome: a
qualitative study (51)
and to discuss how such methods might be used in PCOS
research.
Qualitative research
What is qualitative research?
Qualitative research plays a crucial role in influencing
clinical practice by shedding light on patient experiences.
The role of the qualitative researcher is to try to understand
and convey the phenomenon being studied from the point
of view of those being studied in as unbiased a manner
as possible. Because it is impossible for researchers, who
are humans with their own thoughts, to detach themselves
completely from their own beliefs and personalities,
qualitative researchers constantly try to reflect on how their
own convictions and experiences might influence the ways
in which they observe and interpret phenomena. These
reflections form part of the data that qualitative researchers
collect in what is technically referred to as a “reflexive
account.” Different from quantitative research, which is
often framed by a formal hypothesis, qualitative research is
not governed by the same kinds of formal rules. The choice
of methods and techniques in qualitative work has to be
considered carefully, must be justified, and must be applied
faithfully to make sure that the study is rigorous.9
The origin of qualitative research dates back to early 15th-
and 16th-century anthropological studies. It has been used
in healthcare research since the 1970s and has become
crucial in health communication research.10 The definition
of qualitative research varies depending on the field of
study.11-13 In medical research, there are specific methods
of data collection and analysis for qualitative research. The
common feature of the qualitative approach is that it does
not primarily seek to provide quantified answers to research
questions. Its goal instead is the development of concepts
that can help us to understand social phenomena in natural
(rather than experimental) settings giving due emphasis to
the meanings, experiences, and views of all the participants.
Qualitative studies, just like their quantitative counterparts,
are built upon stringent, well-described, and carefully
planned study design, sampling, data collection, analysis,
Chin Med J 2014;127 (18)
Data collection Journal title First author Published year
Semi-structured Interviews Social Science and Medcine Kitzinger C 2002
Semi-structured Interviews Journal of Obstetric Gynecologic Snyder BS 2006
and Neonatal Nursing
Semi-structured Interviews BMC Women's Health Avery JC 2007
Semi-structured Interviews Journal of Holistic Nursing Crete J 2011
Semi-structured Interviews Journal of Obstetric Gynecologic Weiss TR 2011
and Neonatal Nursing
Semi-structured Interviews BMC Complementary and Billhult A 2012
Alternative Medicine
and reporting methods. Qualitative data collection methods
commonly used in medical and health care areas include,
for example, observations, interviews, and documentary
sources.14 Qualitative data are almost always text-based
and are analyzed using one of the many established forms
of analysis depending on the research aim of the study.
Qualitative methodology, in which the data collection and
analysis are synchronous, is by its very nature malleable.
There is an iterative process of comparing each new finding
with previous data that constantly reshapes the study design
and the line of inquiry. In this way the study design can
be changed according to what has been found, and this is
significantly different from how studies are designed in
quantitative research. Instead of randomized sampling,
qualitative sampling methods are principally information-
oriented or purpose-oriented. Qualitative research
embodies a number of theory-based approaches that differ
from those used in quantitative research, for example,
biography,15 ethnography,16 case study,17 phenomenology,18
and grounded theory.19,20 These have evolved separately
within various social science and humanities disciplines
and as a result tend to have different emphases and to use
particular sets of qualitative techniques and methods. Each
of these methods has “a distinguished history in one of the
disciplines” and has “spawned books, journals, and distinct
methodologies that characterize its approach”.13
Combining qualitative and quantitative research
In a review from 1994, the advisability of combining
qualitative and quantitative approaches in research was
questioned because of the apparent incompatibility of
the epistemological assumptions that underpin the two
paradigms.21 However, this review was challenged by the
results of a specific study conducted with mixed methods in
1998.22 Since then, this mixed methodology has been valued
by more and more medical researchers and has increasingly
been used to augment clinical trials. 23-27 For instance,
Creswell et al24 expand on this theme by stating, “When
used in combination, both quantitative and qualitative data
yield a more complete analysis, and they complement each
other”. Qualitative research within, and in association with,
randomized controlled trials (RCTs) can be used to improve
the quality of the trials.28 The contextual understanding of
Chinese Medical Journal 2014;127 (18)
patient experiences and perceptions gained by qualitative
means, such as personal interviews and focus groups, can
enhance the quantitative data from RCTs.
Pope and Mays29 concluded that qualitative and quantitative
methods can be characterized as complementary rather than
exclusive based on the following characteristics: qualitative
work can be conducted to provide essential preliminary
data for quantitative research; qualitative techniques such
as observations, in-depth interviews, and focus groups
(which are covered in subsequent papers in this series)
can be used to provide a description and understanding
of a situation or behavior; and qualitative methods can be
used to supplement quantitative work.29 This latter aspect
of qualitative research can reflect the validation process,
such as in “triangulation” where three or more methods
are used and the results are compared for convergence
(for example, a large-scale survey, focus groups, and a
period of observation), or can be part of a multi-method
approach that examines a particular phenomenon or topic
on several different levels. According to Pope and Mays,
qualitative research can also complement quantitative work
by exploring complex phenomena or areas not amenable to
quantitative research. For example, in studying PCOS we
cannot determine the association between doctors’ attitudes
and patient conditions through quantitative methods, but
qualitative methods can readily provide useful information
on such relationships.
One outstanding example of such research using mixed
methods was improving the design and conduct of the
ProtecT (prostate testing for cancer and treatment) RCT
by embedding it within a qualitative research framework.30
Because the recruitment for the trial was difficult, in-
depth interviews were used to investigate the recruitment
process. Initial qualitative findings showed that recruiters
had difficulty in discussing clinical equipoise and in
presenting treatment options equally; they unknowingly
used terminology that was misinterpreted by potential
participants. The findings from the qualitative research were
used to determine changes to the content and presentation
of the information. These changes increased the recruitment
rate from 40% to 70%, all treatments became acceptable,
and a trial with three separate treatment arms became the
preferred design. The findings of that study support the idea
that the conduct of a trial is not always as straightforward
as it might appear. They also imply that qualitative research
methods, when applied in combination with open-minded
clinicians and flexible or innovative trial designs, might
enable even the most difficult evaluative questions to
be tackled and might even have substantial impacts on
apparently routine and uncontroversial trials.
Usefulness
The growing usefulness of qualitative research has been
described in healthcare services and management research.
A review found that the publication rate of qualitative
research articles has not kept pace with that of quantitative
research articles, but citation analysis suggested that
3311
qualitative research articles contributed comparably to the
field’s knowledge base.31 However, the value of qualitative
research has been questioned by Lipscomb because
qualitative work lacks external validity and it cannot be
generalized.32,33 He stressed that qualitative researchers
should emphasize that their work cannot inform practice,
but if such claims are advanced anyway, the process of their
study should be explicitly stated. Thus when we talk about
the usefulness of qualitative research, we cannot ignore its
rigor. It is also important to note that qualitative research is
hypothesis generating.
Rigor in qualitative research
In 2001, Barbour proposed that the question about
qualitative methods in medical research is no longer
whether they are valuable but how rigor can be ensured
or enhanced.34 The concern with the rigor and credibility
of qualitative methods has led to the development of a
number of checklists for assessing qualitative research.35-37
Checklists play an important role in improving qualitative
research methods, but overzealous and uncritical use
of such checklists can be counterproductive. Reducing
qualitative research to a list of technical procedures is
overly prescriptive. If we succumb to the lure of a “one
size fits all” solution, we risk being in a situation where
the tail (the checklist) is wagging the dog (the qualitative
research).34
There are different opinions about how to improve the
quality of qualitative research. For example, Power claims,
“Questioning the validity of checklists and the prevailing
methodological orthodoxy in qualitative research is
useful, but of greater relevance is the need to promote
(and teach) a more observational paradigm for qualitative
health research”, and Williams reflects, “Rigor may lie in
the unreported details, peculiarities, and idiosyncrasies of
studies as much as in the overarching issues contained in
a checklist.” The challenge is finding a way of making it
possible and acceptable to report these details openly.38, 39
A review in 2004, which described the development
of qualitative research in oncology and palliative care,
found that the publication rate of such research increased
during the 1990s and that the use of descriptive checklists
allowed researchers to focus on the whole picture of
the methodological components of qualitative research.
Checklists have contributed to raising awareness regarding
the lack of attention to some methodological aspects,
in particular to those aspects specific to the qualitative
paradigm. 40 The editors of Patient Education and
Counseling recently published an editorial describing
four broad questions that authors could ask themselves
in drafting papers to help them assess the quality of their
qualitative research. The four questions asked what is
known, what is new, and why it matters; what the methods
are and whether they are appropriate; whether the presented
data support the findings; and whether the language is
clear and concise. The editors also made it clear that they
did not wish to propose a prescriptive set of criteria that
3312
would constrain future research because the special value
of qualitative research is that it minimizes the constraint
that what we already know imposes on what we can find
out.41 These questions require the consideration of every
qualitative researcher so as to ensure that the methods
used in qualitative research meet the rigorous standards
of the medical community and that the fundamental
methodological aspects of the research are reported
accurately.
What can qualitative research add to PCOS
research?
In the field of health service and management research,
qualitative methods are used to understand patients’
experiences and their feelings about some treatment
processes, to evaluate policy, to explore patient-clinician
relationships and, increasingly, to complement quantitative
methods. All of these are areas in which qualitative research
might prove useful in relation to PCOS.
Understanding patients’ experiences
As a chronic medical condition, PCOS has clinical
implications throughout the patient’s lifespan and presents
with a variety of serious clinical sequelae.42 Considering
the various physical manifestations of PCOS, the potential
for emotional distress in living with the disorder is great.
Although quantitative questionnaires have shown that
women with PCOS often have psychological problems such
as reduced quality of life, poor self-esteem, depression,
and anxiety,7,43 qualitative findings can provide new areas,
issues, and variables that can then be studied quantitatively.
While quantitative data can answer questions of “what” and
“how many”, qualitative methods can provide answers to
questions of “why”.
This notion is more than just anecdotal because it has been
put to effective use by some researchers. Kitzinger and
Willmott8 conducted the first qualitative study of women
in the UK with PCOS to explore the impact of PCOS
within a feminist framework. They interviewed 30 women
aged 21 to 42 years and uncovered the women’s feelings
of frustration and anger toward health professionals for
delayed diagnosis and a lack of information; feelings
of “freakishness” about their hirsutism and menstrual
irregularities; and feelings of being “captive” by the need
to strive for the ideals of “normal femininity.” A similar
phenomenological study revealed troubling hirsutism and
femininity issues and echoed the theme of wanting to be
normal.7 The aspects of PCOS that are most troubling for
the patients change according to different age levels, and a
qualitative study designed by Weiss and Bulmer described
young women’s experiences of living with PCOS and
found that they are marked by daily physical, social, and
emotional challenges.44
Because qualitative research is relatively new in PCOS
research, there is still work to do in understanding patients’
experiences. It is necessary to implement qualitative
Chin Med J 2014;127 (18)
research in different countries and among different age
groups because people’s experiences vary according to their
living environment, culture, religion, and education. For
instance, considering the significant impact on infertility
in women affected with PCOS, studies involving patients’
experiences at different stages of their fertility are essential.
In another example, sub-fertile women with PCOS from
China and the US might report different thoughts about
infertility considering the one-child policy in China.
These research areas have the potential to provide rich
descriptions of what it is like to experience an illness or
suffering and should be an essential component of health
services research.29
Experiences of complementary and alternative medicine
Despite the high prevalence of PCOS, there is no standard
long-term treatment and current treatments for PCOS
are only moderately effective at controlling symptoms
and preventing complications. Therefore, women are
increasingly turning to complementary and alternative
medicine (CAM). When 648 women were asked, “If your
PCOS could be safely and effectively helped by something
else besides fertility drugs or birth control pills, would that
interest you?”, 99% responded “yes”.45 Another landmark
study showed that one in three Americans use CAM in
some capacity.46 The use of CAM in China might be much
higher because Traditional Chinese Medicine (TCM),
which is a part of CAM, has been used for thousands
of years and is often administered as a complement to
Western medicine.13 CAM methods such as acupuncture,
mindfulness meditation, herbs, and dietary supplements
are also used to treat PCOS. However, despite the high
prevalence of CAM use, the evidence for the effectiveness
of such treatments lags behind its usage.47
CAM methods might be associated with particularly potent
placebo effects such as patient–practitioner relationships
and healing changes that occur in interactive, iterative
ways.48 This has led some researchers to suggest that larger,
well-designed RCTs are needed to further evaluate the
safety, effectiveness, and mechanisms of CAM treatments
for PCOS.47 However, there are doubts as to whether the
RCT model is suitable to assess the complex interventions
that characterize CAM techniques.49
Qualitative research provides an appropriate approach to
systematically describe why patients affected with PCOS
flock to CAM and to better understand their needs and
therapeutic perceptions. Richardson et al50 stated that
although most patients sought a cure or improvement
in their condition they were also looking for hope,
reassurance, explanations, advice, and understanding
based on an unpublished study. A recent qualitative study
elucidating how women with PCOS experience treatment
with acupuncture provided similar information. 51 That
study found that acupuncture treatment with a combination
of manual and electrical stimulation provided hope for
patients because the treatment showed positive results.
These positive results empowered the patients to take
Chinese Medical Journal 2014;127 (18)
responsibility for their future well being even though
they might have initially been skeptical about the
treatment. Because PCOS had affected the patients for
many years, even small improvements gave them hope
and encouragement that their bodies were still capable of
functioning normally.
Qualitative research techniques provide a broad spectrum
of information that enables researchers to understand not
only which treatments are effective but also how and why
they work (or do not work).
A complement to quantitative research
The only article about using a mixed methodology in
the study of PCOS is an editorial written by Moreira and
Azevedo in response to the work of Elsenbruch et al.52,53
They discussed adding qualitative methods to a study
using self-reported measures to characterize PCOS patients
who were at risk of psychiatric disease and to assess the
impact of emotional distress on patients’ quality of life.
Moreira and Azevedo52 stated there was a limitation to
the purely quantitative instruments used to assess what
are essentially subjective aspects of health. Regardless of
other details of the study, all of these authors came to an
agreement that “different approaches are possible and in
fact necessary to expand our yet limited understanding of
the psychological aspects of PCOS. Mixed methodology
combining quantitative and qualitative methods may
reveal complementary results”. We endorse their statement
that “we are looking forward to yet unexplored ways to
characterize and, in the end, help these women cope with
PCOS and its consequences”.
Obesity in PCOS women is a case in point. Quantitative
studies have revealed that obesity is correlated with
the pathophysiology of PCOS and might affect female
reproduction through specific mechanisms.54-56 However,
such research cannot answer the question of what
psychological effects obesity has and whether such effects
influence the clinical manifestations of PCOS. We can
answer such questions if qualitative and quantitative
approaches are used together and as complements to each
other. An augmented, mixed methodology that integrates
basic mechanistic studies to obtain a more rigorous
understanding of PCOS is warranted.
Improving service quality
Because research in PCOS is rapidly advancing, it is vital
that research evidence is translated to knowledge and
action among patients, healthcare professionals, and policy
makers.32 Such needs were highlighted in a qualitative study
describing the information needs of women with PCOS.57
In that study, 10 South Australian women aged 28 to 38
years were studied using in-depth qualitative interviews to
explore the complexity and in-process nature of meanings
attached to PCOS. They found that the Internet, rather than
physicians, proved to be the most versatile and beneficial
source of information for women with PCOS. The study
showed that women with PCOS need information and
3313
guidance about how to take control of their own health
and how to engage in a healthy lifestyle. The quality of
healthcare services might be significantly improved if
medical practitioners can provide information about PCOS
as early as possible.
In another recent qualitative report, 10 women with PCOS
participated in individual, semi-structured interviews related
to their experiences in the management of their disorder
and the meaning of those experiences to them.58 That study
found that women with PCOS face many challenges in
managing their disorder and in their desire to gain control,
balance, and well being through a comprehensive treatment
plan. These findings have implications for healthcare
providers in addressing quality of life issues and overall
health outcomes. Such research on PCOS provides an
opportunity for patient involvement in decision-making,
the development of clinical guidelines, and the promotion
of healthy lifestyle choices. Moreover, because of the
communication difficulties that often exist between doctors
and patients,59 such research can offer physicians more
information about patient-clinician communications so as
to help patients make appropriate treatment choices.50
Summary
PCOS is a heterogeneous condition that can cause severe
psychosocial stress. Qualitative methods provide a unique
opportunity to understand the lives of women with PCOS,
to describe their experiences with CAM, to complement
quantitative research, and to improve the quality of
healthcare services. Qualitative research, however, will
only be widely accepted and understood if it is of good
quality and rigor. The ultimate goal of research is to help
women affected with PCOS cope with this syndrome and
its consequences. Therefore, by adding the rich, contextual
data that can be obtained through the use of qualitative
methods, researchers can make the results of their studies
more valuable and more appropriate for guiding and
influencing clinical practice.
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(Received April 6, 2014)
Edited by Chen Limin