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:
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.