Key words
uterine fibroid - fibroid symptoms - fears/concerns
Introduction
With an incidence of 20 to 40%, uterine fibroids are the most common solid benign
tumours in women of reproductive age [1]. Prevalence among African-American women is 80% at the age of 50 years and among
so-called Caucasian women 70% [2]. Symptoms vary according to fibroid size, number and location and include hypermenorrhoea
with secondary anaemia, bleeding disorders, dysmenorrhoea, lower abdominal pain and/or
pressure in the bladder region, infertility and miscarriage. A large proportion of
affected women is asymptomatic [3], [4]. To date few studies of the mental health of women affected by uterine myomatosis
have been conducted. Spies et al. (2002) showed that symptomatic uterine fibroids
can have a negative impact on health related quality of life (HRQL) through impairment
of daily activities and anxiety, which may develop before and after diagnosis [5]. A European comparative study states that uterine fibroids impair HRQL to a higher
degree than other chronic diseases such as asthma, gastro-oesophageal reflux and irritable
bowel syndrome [6]. Patients report psychological distress, helplessness in dealing with the diagnosis
and treatment options, negative body image, effects on sexuality and a lack of support.
They worry about appearing pregnant or overweight due to visible abdominal enlargement
[7]. In a Brazilian study anxiety, particularly with regards to heavy bleeding and pelvic
pain, is described as one of the major stressors of fibroid patients [8]. In addition, patients report fearing loss of control and unpredictability of menstruation
[9]. Downes et al. (2010) also highlight that in addition to physical effects, negative
effects on emotional and mental health are evident in women with fibroids [6]. In 2005 Gallachio et al. showed that in their questionnaire study collective of
American women, almost 80% of patients having a hysterectomy with a preoperative diagnosis
of uterine fibroids reported fear of malignancy as the reason for their decision to
undergo surgery [9].
In view of the benign nature and good treatability of this condition most of these
patient concerns are in actual fact unfounded. Thus, if the fundamental fears and
individual anxieties of fibroid patients are known, through targeted counselling it
should be possible to allay these concerns and allow women an improved understanding
of their condition. No study focusing on patient concerns has yet been conducted in
Germany. The aim of this survey was to define possible fears and concerns in fibroid
patients, describing their severity and any possible correlation with sociodemographic
parameters such as age, level of patient information/knowledge and immigrant status.
Patients and Methods
Data acquisition
Between January 2016 and January 2017 807 new patients attending a university hospital
fibroid clinic were surveyed consecutively, before doctor-patient consultation, using
a two page, internally developed questionnaire.
On page 1 of the questionnaire “Fears/Concerns of Patients with Fibroids” various
sociodemographic data were recorded (age, country of birth, level of schooling, employment,
source of information and self-assessed level of knowledge about fibroids, duration
of diagnosis). These person specific data served to categorise study participants
into groups.
The second page listed 20 possible fears and concerns with respect to health related
consequences, treatment and outcome of fibroids ([Fig. 1]). These 20 items – chosen in view of their repeatedly being mentioned by fibroid
clinic patients – were presented in tabular form with the choice of three possible
answer categories: “not applicable”, “partially applicable” or “definitely applicable”
(multiple answers possible). The questionnaire also allowed ample space for free additional
comment. The two-page questionnaire was filled in by patients before doctor-patient
consultation and deposited in a designated post box.
Fig. 1 Fears and concerns listed in the questionnaire.
Women who provided incomplete sociodemographic data or who did not answer the questions
on fears and concerns were regarded as non-responders.
The study was conducted after extensive consultation and with the consent of the institutional
board; it complies with the Charitéʼs charter on assurance of good scientific practice
and the Berlin data protection act.
Statistical analysis
Data were analysed using IBM SPSS 24. For an initial overview, after extensive descriptive
analysis, the 20 listed fears were divided into five groups (with respect to the fibroids
themselves, treatment, general health, pregnancy and the body) and the three possible
answers analysed for frequency of occurrence. In the further analysis of possible
sociodemographic influences the answers “definitely applicable” and “partially applicable”
were combined as the single characteristic “concern present”. Similarly in the patient
assessment of their own level of knowledge the answers “knowledge level good” and
“knowledge level moderate” were pooled to “well-informed”. Extensive analysis of the
correlation between sociodemographic factors and stated fears was performed. Correlation
was tested using Fisherʼs exact test (two-tailed). Significance level was set at p < 0.05.
In view of the explorative nature of the study no adjustment for multiple tests was
performed.
Results
Descriptive analysis
The questionnaire was distributed to a total of 807 patients attending the fibroid
clinic (return rate 90.5% = 730/807 patients, of whom 168 were born outside of Germany
and 554 in Germany; birth data missing for 8 patients). Significant sociodemographic
data from the study population are summarised in [Table 1].
Table 1 Sociodemographic data of the study population (percentages rounded to whole numbers
or *means with range).
|
Parameter
|
n/%
|
|
Responders
|
730 patients
|
|
|
168 patients (23%) from 61 different countries
|
|
Age
|
42 years* (23 – 82 years)
|
|
Time interval since fibroids diagnosed (according to patient)
|
5 years* (1 month – 46 years)
|
|
Level of schooling
|
70% matriculation
|
|
29% other school leaving certificate
|
|
1% no school leaving certificate
|
|
Employment (pooled)
|
48% employed
|
|
17% self-employed
|
|
9% health sector
|
|
6% civil servant
|
|
20% other
|
|
|
|
|
|
|
|
|
|
|
|
Level of knowledge about fibroids (self-estimation)
|
27% good
|
|
50% moderate
|
|
23% poor
|
|
Source of information on fibroids and their treatment (multiple answers allowed)
|
72% doctor
|
|
67% the internet
|
|
42% other
|
|
2% none
|
Patient information and level of knowledge
Most patients had informed themselves about their condition before their fibroid clinic
appointment and regarded their level of knowledge as good (27%) or a moderate (50%).
The most commonly stated sources of information were a doctor (72%) and the internet
(67%). 2% of participants had not yet sought to inform themselves.
Incidence of stated fears/concerns
The questionnaire presented patients with 20 possible fears and concerns that could
be answered with either “not applicable”, “partially applicable” or “definitely applicable”.
[Fig. 2] shows the incidence of fibroid-associated concerns for the entire study population,
the answers “definitely” and “partially applicable” counted together.
Fig. 2 Incidence of fibroid-associated concerns for the entire study population (Questionnaire
answer: “definitely” or “partially applicable”; multiple answers possible).
In order to further characterise the response behaviour of the patients [Fig. 3] shows the fears and concerns grouped together. It can be seen that concerns about
treatment and the fibroids themselves are reported most often for both “definitely
applicable” answers and overall (concern “definitely” or “partially applicable”).
Fig. 3 Fears and concerns are grouped according to themes as follows: Fibroid: loss of control, blood loss, malignancy, increasing size, increasing number, pain.
Body: quality of life, foreign body sensation, weight gain. Health: mental state, general health, sexuality, stress. Pregnancy: miscarriage/premature birth, unable to fall pregnant, passing on to own children.
Therapy: necessity for treatments and their side-effects, hysterectomy, consequences of nonaction.
Analysis according to answers stated.
Relationship between fears/concerns and level of knowledge: Four of the listed anxieties
showed significant correlation in terms of severity with patient level of knowledge.
Women who rated their knowledge as poor reported fear of malignancy (n = 652, p < 0.001)
and passing fibroids on to their children (n = 625, p = 0.014) significantly more
often. Well-informed women reported fearing “quality of life restrictions” (n = 660,
p = 0.012) and “loss of the uterus” (n = 673, p = 0.041) significantly more often
than the poorly informed ([Fig. 4]).
Fig. 4 Significant correlation between patient level of knowledge and fears/concerns (Answers
“definitely/partially applicable” combined to “anxiety present”; multiple answers
possible; the answers “knowledge level good” and “knowledge level moderate” were pooled
to “well-informed”).
Women whose only source of information was their doctor reported fear of negative
effects on sexuality (n = 249, p = 0.038), foreign body sensation (n = 241, p = 0.029)
and “consequences of non-action” (n = 244, p = 0.012) significantly less often. They
only reported fear of miscarriage/premature birth (n = 234, p = 0.026) more frequently.
Relationships between fears/concerns and patient age, duration of diagnosis, level
of schooling and employment: Young patients (age ≤ 40 years) more often mentioned
concerns with respect to birth/pregnancy and increasing number of fibroids (n = 670,
p = 0.009). Patients over 40 years of age on the other hand more often feared significant
blood loss (n = 683, p = 0.012) and negative effects on general health (n = 677, p = 0.031)
([Fig. 5]).
Fig. 5 Significant correlation between age and fears/concerns (Answers “definitely/partially
applicable” combined to “anxiety present”; multiple answers possible).
Patients with shorter duration of diagnosis (≤ 12 months) also mostly reported concerns
around birth/pregnancy and a foreign body sensation (n = 605, p = 0.045). Among women
with duration of diagnosis > 12 months concerns were focussed on the need for treatment
significantly more often (n = 611, p = 0.009) ([Fig. 6]).
Fig. 6 Significant correlation between duration of diagnosis and fears/concerns (Answers
“definitely/partially applicable” combined to “anxiety present”; multiple answers
possible).
Patients with general qualification for university entrance had less concerns overall
than patients with other or no school-leaving qualifications. Only fear of miscarriage/premature
birth (n = 635, p < 0.001) and of not being able to fall pregnant (n = 641, p < 0.001)
were reported significantly more often in this group.
Data did not confirm the hypothesis that women working in the health sector have less
anxiety than those working in other sectors.
Fears and concerns among immigrants: Possible influences of immigration were also
studied with only few differences in the incidence of the above-mentioned fears and
concerns being found between patients with vs. without immigrant background. Significant
correlation was however found for the following concerns: For women without immigrant background: further tumour growth (p = 0.012) and negative effects on sexuality
(p = 0,006); for immigrants: miscarriage or prematurity (p = 0.001) and weight gain
(p = 0.03).
Discussion
This first large study focusing explicitly on fears and concerns among patients with
uterine fibroids shows that some affected women have high levels of disease-related
anxiety despite the benign nature and good treatability of the condition. Their concerns
relate mostly to increasing size and number of fibroids, to the need for treatment
and possible side-effects of treatment. Concerns differ according to patient age and
duration of diagnosis.
Some of these concerns can be alleviated by the treating doctor through improved levels
of patient information. A high level of education seems to be preventive.
Our data confirm statements by Ghant et al. (2015) to the effect that fibroids constitute
a significant emotional burden for affected women [7], and they describe specific fibroid-associated fears in the various phases of a
womanʼs life.
Numerous gynaecological studies have shown that most patients have a need for information
about their condition to reduce fears and feelings of uncertainty [10], [11], [12]. Utz-Billing et al. (2006) also described that counselling about treatment options
(operative and nonoperative) by the responsible gynaecologists can reduce patient
concerns [13].
However in the current study, patients who rated themselves as well-informed reported
fear of the need for possible hysterectomy and concerns about reduced quality of life
significantly more often. Although hysterectomy is the only completely curative treatment
available for fibroids, in many cases it is unnecessary [14]. It is however questionable whether these women who judged themselves as well-informed
were in fact well-informed enough about uterus sparing treatment options. This question
was not covered in the survey. On this point, a study from 2006 found that 38% of
gynaecologists gave their patients no information about – and 13% of patients were
advised against – nonoperative treatment methods [13]. In our study collective well-informed patients reported fear of reduced quality
of life more often. Other studies have however shown that HRQOL in fact improves after
treatment [15], [16].
In our collective patients with lower levels of schooling reported more fears. The
Norwegian HUNT study highlighted the fact that a higher level of education is generally
protective against the development of fears and also protects against depression [17]. Another survey of concerns among pregnant women demonstrated the same relationship,
with education described as the primary determinant of stable personality-inherent
anxiety (State Trait Anxiety Inventory) [18].
In 2008 Divakar described asymptomatic fibroids in women finding that the mere diagnosis
was a cause of anxiety. Various general fears also found in our study were described:
malignancy, hysterectomy, reduced fertility/problems in pregnancy, increasing tumour
size and associated treatment options as well as possible negative consequences of
“waiting and watching” [14]. Ghant et al. (2015) described the progression of fears in patients with symptomatic
fibroids. They found that before diagnosis patients were distressed and anxious through
lack of knowledge and uncertainty about the cause of their symptoms. Following diagnosis
on the one hand patients were relieved about the benign nature of their condition,
but on the other hand continued to be concerned about possible complications and consequences
of their fibroids [7].
The often cited fear of malignancy [8], [9], [14] ranked number 12 of 20 possible fears and concerns in our patient collective. Two
thirds of participants mentioned this concern, poorly informed women more often than
well-informed.
Various correlations between fears and symptoms are described in the literature. Sepulcri
et al. (2009) found a relationship between current pain intensity and degree of fear/anxiety
in endometriosis patients [19]. Studies of patients with fibroids highlight the development of anxiety for unpredictable
pelvic pain and significant blood loss [8] as well as unpredictable menstruation [5]. The perception of fibroids as part of oneʼs own body and not as a foreign body
is a preventive factor against the development of anxiety and distress [20]. In our study 54.8% of patients reported anxiety due to foreign body sensation,
more commonly women with shorter duration of diagnosis. For this fear in particular
the doctor, as a source of information, can reduce anxiety through appropriate counselling.
Friedl et al. (2015) note that in endometriosis patients symptoms of anxiety decrease
with increasing age [21]. Reasons for this are thought to be the better integration of the condition into
everyday life and consequently less stress and less development of affective symptoms
[22]. This progression may also be true for women affected by fibroids, though long term
studies are lacking. In our study patients aged over 40 years mostly had fears about
general health and significant blood loss.
The following are possible limitations of our study:
-
The fears and concerns were prescribed.
-
Our study collective was not representative of the German population. The proportion
of participants with matriculation is above average (Germany 29.5% [23]) and the proportion of immigrants relatively small (Berlin 27.7% [24]).
-
Estimation of knowledge level and duration of diagnosis were self-assessed by patients.
-
The group of women with immigrant background only included those of the so-called
first generation (with personal immigration experience).
-
Severity of symptoms that may have influenced individual concerns was not recorded
by the questionnaire.
Clinical Bottom Line
Most fibroid patients demonstrate fears and concerns to varying degrees. Individual
life circumstances influence which fears feature most prominently (e.g. fear of miscarriage
among young women, fears about general health consequences among older women). Treating
doctors should address these fears in a targeted manner in order to reduce unnecessary/unfounded
anxiety. To this purpose clear and understandable information handouts that specifically
address the fears and concerns highlighted in our study could be helpful.
