Key words
Abnornal uterine bleeding, experience, women, primary care
Introduction
Abnormal uterine bleeding (AUB), including the sub-term heavy menstrual
bleeding (HMB), can be excessive, erratic or prolonged blood loss that
interferes with a woman’s physical, mental, social and quality of
life(1). In the United States, it is estimated that 1.4 million cases of
AUB are reported each year (2). The International Federation of
Gynaecology and Obstetrics (FIGO) defines normal uterine bleeding as
approximately 40mls of blood loss over a 5-7 day menstrual period cycle,
and heavy bleeding as 100mls of blood loss throughout a whole cycle (3,
4). Although the recent reframing of FIGO terms (5) may go some way to
improving a medically defined definition of AUB, such descriptions are
still unlikely to be meaningful to women, which may impede the required
engagement and discussion with their primary health care providers.
AUB is usually a symptom of benign issues however it is also the most
common symptom of endometrial cancer (EC) or hyperplasia (pre-cancer)
and therefore warrants specialist investigation as early as possible. EC
is the most common gynaecological cancer, increasing in incidence, with
around 400 women diagnosed in New Zealand (NZ) each year. There is a
concerning and substantial growth of EC incidence in young, Pacific
Island women, with almost half being diagnosed at pre-menopausal ages
(<50 years) (6). EC incidence, morbidity and mortality rates
in women who identify as Māori and Pasifika are much greater than those
who identify as European/Other (7, 8).
Although AUB can have serious medical consequences and significantly
impact women’s daily life, it isn’t a condition that women seek timely
care for – and this is seen in many countries world-wide; around half
of women with HMB believe there are no treatment options available for
them (9), even if they experienced symptoms of anaemia (10).
Studies which report on EC prevalence in NZ often link the cause of
advanced stage diagnosis to ‘late presentation (11, 12), placing women
at fault for not having sought more timely medical intervention. We
aimed to reframe these deficit narratives by looking beyond the numbers,
to learn from lived in experiences of women with AUB in NZ. By doing so,
it is our goal to improve local support for timely access to EC
investigation and provide new perspectives to transform the care pathway
for women seeking care.
Methods
The population sample was recruited from the Women’s Clinic at
Wellington Regional Hospital, New Zealand (CCDHB) from October-December
2019. We obtained local institutional board ethics approval for the
study (#H19-072). Women were invited to the study to tell their story
about their journey to the clinic for AUB at their first specialist
appointment for AUB (including HMB or post-menopausal bleeding). Women
were identified from clinic notes on the day of their appointment, and
given a study brochure which described what was involved in the study.
If they accepted the study invitation, written consent was received
before conducting the interview after their appointed clinic
consultation. Women were provided with a grocery voucher for their
participation.
A total of 30 women were identified as appropriate candidates for the
study. Of these, 5 women declined the invitation, 5 women did not attend
their appointment, and 5 women were missed (needed an interpreter or
left clinic whilst other interviews were being conducted). Table 1 shows
sample characteristics of the total number of women included in study.
The median age of women included in the final cohort was 45 (± 8 years).
Self-identified ethnicity was recorded, nine of the fifteen women
identified as NZ European, two identified as NZ Māori, and four
identified as Pacific Islander (Cook Islander, Samoan, Tongan).
Women were given the opportunity to bring their partner, whānau or
support into the interview with them. Participants were asked to begin
recounting their first experiences with AUB. The format of the
interviews was semi structured with key prompt points to facilitate
discussion that included:
- When did you first notice your AUB? Have you sought treatment before?
- Did you discuss with friends or family?
- Did you see a GP, how was your experience?
- What has helped you book and attend your appointment today?
-
All interviews were audio-taped and transcribed by a professional and
confidential third party transcription service. Detailed and
semi-inductive thematic analysis (13, 14) using NVivo software
was used to code themes in each transcript. This was a cyclical process
of reflection and analysis. First, authors read and became immersed in
all the transcript data, including preliminarily identifying codes and
drafting of the codebook. Secondly, each transcript was re-read in
detail and coded line-by-line. Thirdly, clustering of the codes from
each interview into higher level themes were developed inductively.
Coding was completed independently by CH and RJ and themes were
developed from combined coding of both authors, with the aid of SF.
Results
For all women, AUB had a significant and traumatic impact on their
quality of life including their relationships and their work or
education. Most women experienced symptoms such as passing large blood
clots, pain, poor sleep, mood changes and bowel changes, which affected
their mental health and family relationships. At the point of these
interviews being undertaken, and after many investigations, no one had a
formal diagnosis, or explanation why they had developed AUB. Women faced
a multitude of barriers at each step of the care pathway, which varied
for each individual, from systematic to personal complexities. However,
four overarching themes were developed from the interviews that had an
effect on women’s decision making around AUB care: health care provider
experience, health literacy, commitments and taboo (figure 1).
It became obvious at the beginning of the interview process that this
was a distressing journey for women in their search for diagnosis and
treatment. Many women cried during the interview session or used strong
language to describe their feelings.
“I started crying in the intern and I didn’t really expect
it….I was like I’m sorry can you just do all the options again
‘cause I just got so upset, like it kinda’ just all scrambled. And I was
really nervous with this appointment too” . Participant 5.