Key words
dyspareunia - endometriosis - epidemiology - gynaecology
Schlüsselwörter
Dyspareunie - Endometriose - Epidemiologie - Gynäkologie
Introduction
Endometriosis is an estrogen-dependent, commonly chronic gynaecological disorder which
is characterised by the presence of endometrium-like tissue outside its physiological
localisation in the uterus [1], [2].
The epidemiological data on endometriosis available up to now predominantly refers
to very selective approaches [3], [4], [5], [6], [7] and is therefore not very representative. A German study by Abbas et al., based
on health insurance data from 2007 using the ICD-10 classification system, appears
to provide the most reliable information. The data showed prevalences of 8.1 % of
women being affected and 5.7 % of women requiring treatment in their reproductive
phase of life [8].
Women of reproductive age usually develop the disorder, i.e. in the time between their
first (menarche) and last menstrual bleed (menopause). However, in their “lifecycle
approach”, Brosens et al. showed that a womanʼs entire life cycle can be affected
[9]. From a sociomedical perspective it should be emphasised that the women are not
only affected in their reproductive phase, but also in an important productive phase
for their career development. The disorder is accompanied by significant costs [10], [11], [12].
The causes and mechanisms which play a role in the development of endometriosis are
not completely clear. A multifactorial genesis of the disorder is currently being
discussed amongst other things, the research focus being on endometrial cell clusters.
Genetic, molecular and immunological defects and aberrations, as well as environmental
endocrinological factors, appear to play a role in promoting the settlement of endometrial
cells in unphysiological localisations and overriding the designated immune response
[1], [13], [14].
Endometriosis is not associated with a consistent clinical appearance. A reason for
this is the various sites of endometrial settlement, which lead to the various problems
and symptoms experienced by affected women [15]. Pain during menstrual bleeding (dysmenorrhoea) and infertility are typical complaints
in women affected by endometriosis [16]. Tiredness and exhaustion, gastrointestinal disorders (e.g. diarrhoea, bloating,
intestinal colic, nausea and stomach ache), heavy or irregular menstrual bleeding,
pain during sexual intercourse (dyspareunia) or afterwards and also dizziness and
headache have been attributed to endometriosis [17]. In isolated cases, endometriosis can also be associated with serious complications.
The symptoms and consequences of endometriosis can significantly affect the quality
of life of affected women in many areas. Pain and other physical symptoms can particularly
hinder coping with professional and personal daily life [11], [18]. Depression and anxiety disorders can occur as a consequence of endometriosis [19].
Diagnosis is a particular challenge and includes non-invasive and invasive techniques.
Laparoscopy is the central element for diagnosis and, depending on the results and
symptoms, also for treatment. It should be used with the aim of achieving histological
confirmation of the diagnosis [20]. The aim of making an early diagnosis has not yet been achieved either in Germany
or internationally [17]. The duration from occurrence of the first symptoms to diagnosis ranges from 6 to
12 years [21], [22], [23].
A range of surgical and drug treatment options are available; however, they cannot
offer a cure. Because of the complexity of the disorder, an individual treatment concept
has to be developed for each patient which is tailored to their symptoms, site and
severity of symptoms, as well as to their personal circumstances [24], [25]. The still unexplained aetiology, the chronic and variable course of the disorder,
distressing treatment with many side-effects as well as a high tendency of relapse
are a great challenge for doctors as well as for the patients. The focus of medical
assistance up to now was the treatment of physical symptoms. Affected patients – despite
their young age – often receive little support in coping with the disorder and the
topic has also found little resonance in scientific journals [26].
The outcome of this is the subject of the present study. Based on original data from
a survey using open questions, we investigated which inhibiting and supporting factors
the study participants listed when coping with disorder to develop recommendations
for better care.
Materials and Methods
Data collection
The investigation was carried out as part of a study sponsored by the Federal Ministry
for Education and Research (Bundesministerium für Bildung und Forschung, BMBF) to
evaluate a training programme for women with endometriosis [39]. To improve understanding of how patients cope with endometriosis, the patient questionnaire
used to evaluate the training programme was supplemented with open questions about
coping with the disorder (“What has helped you to cope with the disorder the most?”
and “What has been lacking in the management of the disorder and what could be improved?”).
On a sheet of DIN A4 paper, 12 to 14 lines were available to the study participants
to answer these questions. The questionnaire was sent to the participants for them
to complete before they took part in the training programme. All questionnaires which
were received by the Institute for Epidemiology, Social Medicine and Health System
Research at Hannover Medical School by October 2009 were included in the present analysis.
The topic of coping with the disorder was used as part of a dissertation [40] due to the unexpectedly detailed and comprehensive answers.
Development of a classification system
The data basis was the written answers to the open questions in the patient questionnaire.
Data evaluation was performed as a “quasi qualitative” summary of the content analysis
according to Mayring und Kuckartz, including quantitative intermediate steps [27], [28]. Categories were generated from the written material by the inductive formation
of categories and depicted in the form of category systems. The main topics of the
answers were identified and investigated quantitatively by coding of the written material
and subsequent frequency analysis. The open questions used were deliberately worded
in a very broad sense to encourage a wide variety of answers. The intention of the
analysis was to identify these topics with regard to the aims of the project, i.e.
to identify the relevant support needs and – where possible – to attain an impression
of their importance.
Random sample
Recruitment of patients for the study took place through easy access routes such as
newspaper and internet adverts as well as the distribution of flyers in gynaecological
practices. A confirmed diagnosis of endometriosis, age 18 years or over and, because
of the style of data collection, sufficient understanding of the German language were
stated as inclusion criteria. The study participants were therefore composed of 135
women who completed the declaration of consent.
Results
Demographics of the study participants
The mean age of the study participants was 38.4 years (SD ± 8.0 years) and the main
focus lay in the 31–45 year age group. At the time of questioning, 66 women were married
(48.9 %), 27 (20.0 %) were cohabiting and 35 participants (25.9 %) stated that they
were single, separated or widowed. At the time of questioning, 68 women (50.4 %) had
achieved university entrance and a further 15 (11.1 %) technical college entrance.
40 study participants (29.6 %) ended their schooling with a secondary school level
I certificate (GCSEs) and 8 women (5.9 %) with a primary school or secondary general
school certificate. Three women stated that they had graduated from a polytechnic
secondary school and one participant was still at school.
Delay in diagnosis and duration of illness of the study participants
102 participants were able to state when their symptoms first occurred and when the
final diagnosis of endometriosis was made. A mean delay in diagnosis of 7.8 years
(n = 102, SD ± 9.9 years) was found in the study population and, based on information
given about the diagnosis, the mean duration of illness was found to be 7.9 years
(n = 132, SD ± 6.9 years) at the time of data collection. The delay in diagnosis was
not taken into account here.
Coping with the disorder from the perspective of the programme participants – overview
The supporting and inhibiting factors when coping with the disorder, as well as the
factors that were determined as main categories in the analysis, were initially listed
in synopses. 120 women gave a written answer to the question: “What has helped you
to cope with your disorder the most?”. [Fig. 1] further shows how many women commented on each of the individual categories. No
fixed response options were set out in the questionnaire; the entries are based on
the participantsʼ written answers.
Fig. 1 Supporting factors in disorder management from the perspective of the study participants.
The statements included in the womenʼs written answers could be thematically assigned
to 12 main categories which were then further divided into sub-categories. Due to
the scope and complexity of the classification system, all the sub-categories are
not presented in addition. However, for better understanding, it should be noted that
the main categories were deliberately separated into “professionals” and “professionals
and their performance” based on the patientsʼ information about their social environment
and the health system. Many women named precise people, professions (e.g., relatives,
friends, doctors, psychotherapists etc.) or institutions (e.g. hospitals) in direct
association with their performance, characteristics and behaviour (e.g. “discussion
with my doctor” or “a doctor who takes my problems seriously”), which had a supportive
effect on their disorder management from their point of view. By differentiation and
classification into further subcategories, specific indicators could be gathered about
which professionals and which areas of their performance are of particular importance
from the patientsʼ point of view when dealing with the disorder.
In [Fig. 1], it is clear for the first time that the members of the social environment are ranked
as being on a par with the treatment (n = 58) as being the most important factors
when coping with the disorder by with women who were questioned, followed by the social
environment (n = 50), healthcare system professionals (n = 49) and self-management
(n = 44).
[Fig. 2] shows the responses to the question, “What has been lacking in the management of
the disorder and what could be improved?” from 115 of the 135 women.
Fig. 2 Inhibiting factors when coping with the disorder from the perspective of the study
participants.
A total of 64 participants saw room for improvement which could be assigned to the
“healthcare system professionals” category, followed by performance of the healthcare
system professionals (n = 56) as well as the treatment (n = 53). According to the
study participants, the greatest need for action in the management of endometriosis
lies in these three main categories.
Professional and healthcare system performance
Corresponding with the number of mentions, the results of the quantitative-qualitative
analyses on supporting and inhibiting factors relating to the healthcare system professionals
(all professional care providers and healthcare insurance providers as well as self-help
groups and facilities and their performance) are presented in the following sections.
Presentation of the results, especially factors identified as part of the study, is
outside the scope of this publication.
Supporting aspects
In response to the question about what had helped affected women to deal with endometriosis
the most, 49 of the 120 women (40.8 %) mentioned healthcare system professionals.
Doctors were most commonly named in this main category (61.2 %, n = 30). This was
followed by 14.2 % (n = 7) of women who rated self-help groups or the nationally active
German Endometriosis Union (Endometriose-Vereinigung Deutschland e. V.) and its offers
and services as being helpful. Further support services were found by 6 women via
internet forums (12.2 %), which serve as virtual exchange platforms for communication
and consultation purposes. Hospitals were named by 10.2 % of participants (n = 5)
and 3 women mentioned an alternative practitioner. A psychotherapist, a therapist
(without further description), the Endometriosis League and Womenʼs Health Centres
were each named by one of those affected, respectively.
Professionals were commonly described in direct association with their respective
features and performance. The category “performance of the healthcare system professionals”
was created to record this and contained the statements from a total of 27 patients.
This main category included features and performance of the professionals which underwent
further differentiation into sub-categories such as quality, empathy and communication.
[Table 1] provides an overview of the participantsʼ comments on the sub-categories. The individual
comments are summarised and shown ranked in descending order of relevance. The most
commonly named feature or performance which helped patients to cope with the disorder
is listed first each time.
Table 1 Summary of the comments on the performance of the healthcare system professionals
– supporting influences.
|
Sub-
category
|
“What helped me the most …”
|
|
Quality
|
-
Professionally competent and qualified doctors, gynaecologists, hospitals and contact
persons
-
The belief and the feeling of being in good hands during treatment and in hospital
-
Doctors who give me the feeling that they know what they are doing
-
Doctors who are informed about and skilled in endometriosis
-
A good gynaecologist
-
The right clinic and their right assisted conception centre
|
|
Empathy
|
|
|
Communication
|
-
Discussion with my treating doctor, doctors and
-
Discussion with various doctors
-
Discussion with doctors from an endometriosis centre
-
Postoperative discussion with the surgeon
-
Discussion with a psychotherapist who is also a gynaecologist
|
Altogether, the responses of 11 participants were assigned to the sub-category quality
and the participants commented positively on quality, competence, awareness, reliability
of the professional or the quality of care. A typical comment can be described using
the following quote: “a doctor who knows what he is doing”. An empathetic and sensitive
approach, especially from the doctors towards the patients and their problems when
dealing with the disorder (e.g. “compassion from the doctor”, understanding from doctors“),
was described by a further 11 study participants. In the subcategories, communication
with healthcare system professionals was mentioned by 9 participants who found communicative
interaction helpful (e.g. ”discussions with doctors“ and ”discussion in internet forums”).
Inhibiting aspects
Although the comments about helpful influences from over one third of the study participants
could be assigned to healthcare system professionals, 56 % of the women questioned
referred to aspects which were lacking or in need of improvement in connection with
healthcare system professionals.
In addition to criticism of medical institutions such as hospitals and health insurance
companies – 5 and 4 women remarked on these respectively – it was almost exclusively
the medical profession that was viewed critically in this category. 59 of the 64 participants
(92.2 %) who expressed deficits recommendations relating to healthcare system professionals
based the criticism on the medical profession.
A category for healthcare system professionals was also created for inhibiting aspects.
This included the subcategories quality, empathy, support and communication.
The results of the qualitative analysis of the individual subcategories are shown
in [Table 2] and are listed as a summary of the participantsʼ main statements.
Table 2 Summary of the comments on the performance of the healthcare system professionals
– inhibiting influences.
|
Sub-
category
|
“What was lacking, what could be improved …”
|
|
Quality
|
-
Informed, well trained and competent gynaecologists and doctors in other disciplines
-
Ignorance and poorly informed gynaecologists and doctors
-
Training, education and further education for gynaecologists and doctors in other
disciplines as well as general and improved education of these doctors
-
Better pre/postoperative care in the clinic and from doctors
-
Interdisciplinary teamwork between doctors from various specialities and multidisciplinary
knowledge in doctors from other specialities
|
|
Empathy
|
-
To be taken seriously by gynaecologists and doctors
-
Doctors who take those affected and their symptoms seriously
-
General recognition of the disorder and recognition by doctors, health insurance companies
and social security authorities
-
Sensitivity and empathy from doctors
-
Understanding from doctors, health insurance companies, pension schemes and assessors
-
To be taken seriously by doctors
|
|
Support
|
-
General support and offers of help from doctors
-
Financial support and relief during acute phases of the disorder
-
Coverage of the costs of drugs, rehabilitation measures and alternative therapies
-
Generally more support from health insurance companies
|
|
Communication
|
-
General discussion and someone to talk to
-
Discussion with the surgeon
-
Final discussion after the operation
-
Discussion with the gynaecologist
-
Professional, honest communication
|
The responses of 56 women could be allocated to this area. 52 participants also named
the professional(s) whose performance they criticised.
Critical comments about the quality of the healthcare system professionals were made
by 34 women (60.7 %). These included aspects such as competence, awareness and reliability
as well as the quality of care. The study participants often criticised that the doctors
were not informed about the disorder, that they werenʼt familiar with it and that
they do not have adequate skills in the field of endometriosis. Some women highlighted
the ignorance of doctors in the field of endometriosis, which one study participant
described as “a catastrophic medical situation [–] no one knows!”. From the responses
of individual women, it became clear that they see the doctorsʼ poor level of information
as the reason that their symptoms are not promptly recognised and diagnoses are made
late. It was also assumed that the lacking familiarity of many doctors with the disorder
is the reason that patientsʼ problems are not taken seriously. The criticism is not
only directed at specialists in gynaecology, but also doctors from other disciplines
who are also poorly informed. Multidisciplinary knowledge was called for. In response
to the question about what was lacking in the management of the disorder or what could
be improved, education and training of doctors was commonly mentioned. One participant
demanded “regular training and education for gynaecologists, urologists, internists,
general practitioners, psychologists etc.”.
In the subcategory “empathy”, 26 women (46.4 %) regarded the manner and perceived
attitude of the healthcare system professional towards the patient as being in need
of improvement. Comments were especially summarised here which reflect the womenʼs
assessment of their perception by the doctors/professionals. Most commonly criticised
was that doctors “do not take [affected women and their problems] seriously”. Some
women describe situations that they have experienced with doctors. A typical statement
in this category can be quoted from one participant in the following sentence: “My
many years of pain, especially during menstruation, were not taken seriously by any
of my gynaecologists, but were always just treated with painkillers”. Another patient
reported a statement from her doctor, saying that as a woman, she would just have
to put up with pain. These and other similar experiences have prompted the study participants
to demand that pain and discomfort should be viewed as a pathological event by doctors
and they should recognise the burden of the disorder. This criticism and the resulting
demands are mainly aimed at doctors. A lack of empathy on the part of the health insurance
company and social security authorities were also mentioned by one woman, respectively.
The two subcategories presented represent the most commonly named areas in performance
of the healthcare system professionals. Furthermore, 12 participants (21.4 %) demanded
(more) support from healthcare system professionals and 7 participants (12.5 %) complained
about communication with them.
Discussion
To ensure the widest possible spectrum of responses, a research design was chosen
which allowed for open questions about coping with the disorder in the patient survey.
The aim of the study was to find initial of how the disease management of endometriosis
patients can be supported and improved. These findings have gone into the development
of a training programme for women with endometriosis in which the subject of coping
with the disorder (aspects of the healthcare system, doctor-patient relationship,
social support) has gained significantly more room than originally planned.
Critical appraisal of the study design and limitations of the research method
A fundamental problem in connection with the questionnaire is that the questions posed
with the terminology used could not be further explained to the participants. It therefore
remains unclear to what extent the questions were understood as defined by the research
team. However, a pretest did not uncover any comprehension problems and no obvious
misunderstandings were detected from the available responses. It should also be considered
that the influence of social desirability on the response bias cannot be excluded.
Several study participants wrote answers about experiences in their medical history
which were beyond the actual question. With regard to the study results, it should
always be considered that response styles and response trends are influenced by motivation
and intention of the participant, as well other factors such as the point in time
of the answer. Since no possible answers were provided, it can be assumed that the
present answers do not represent all topics and that the frequency representations
are subject to bias.
Patient selection
As a result of voluntary participation in the study, a selection effect can be assumed.
It cannot be excluded that increased distress and high motivation have an affect on
this study.
With regard to the socio-demographic factors of the subsample, it is striking that
an above-average number of women have a high level of education. Regarding marital
status, almost 70 % (n = 93) of the women were married or cohabiting. The influence
of education and social support on coping behaviour has been proven in various studies
on other illnesses. Therefore, it cannot be excluded that the results obtained in
this study may be especially relevant for socially well-integrated women who are highly
educated and who differ from those with poor social support and poorer education.
For this reason, the problems encountered here in dealing with endometriosis may possibly
have been underestimated.
The results obtained in this work should be viewed as the first indications of possible
problem areas when dealing with the disorder.
The role of doctors in the management of endometriosis
Assuming that the number of women who express their views on a particular topic is
an indication of the importance of this aspect, it can be seen that social support
in particular together with the treatment of endometriosis are of the greatest importance
for the study participants. In this context, the healthcare system professionals only
play a minor role when coping with the disease.
Since the influence on the social environment is often limited, healthcare systems
professionals should take action to improve coping strategies. The presented results
suggest that the performance of the professionals does not always meet the needs and
expectations of the women questioned. Just over 50 % of the answers to the question
about what was lacking in the management of the disorder and what could be improved
related to doctors. The importance of the doctor for a woman affected by endometriosis
was hereby made clear on the one hand; on the other hand the figures make it completely
clear that there is a great need for improvement regarding this profession. In particular,
appropriate (“empathetic”) explanation and counselling is expected from doctors. In
contrast, empathy and communication were indicated as being an important supporting
factor in the social environment, so a compensation for the medical deficits may occur
here.
Doctors who helped to cope with the disease from the womenʼs perspective are characterised
by competence and qualification. Furthermore, according to their own statements, women
benefit from doctors who are understanding towards them and show them compassion.
Therefore, doctors do not only have a role as a medical expert, but also as a personal
contact. In 1996, Muthny expressed the view that doctors play a particularly important
role when coping with an illness. Through professional diagnosis and treatment, they
create the conditions for coping which they can guide in the right direction by discussions,
understanding and compassion based on a trusting doctor-patient relationship [33]. The women questioned very clearly described what is important to them in terms
of coping with the disorder. Proper communication with the doctors (“discussions with
doctors”) is experienced as being helpful. These statements support the call for a
re-evaluation of “talking medicine”, which is also being increasingly demanded by
other healthcare system professionals [29], [30]. The complexity of the disorder requires much time spent as an out-patient as well
as an in-patient. To what extent the current remuneration structures or other aspects
of the healthcare system influence the care of endometriosis should be investigated
as part of further studies [31], [32].
A special feature in connection with endometriosis seems to be that women complain
most frequently about a “normalisation” of their condition and that they and their
condition are “… not taken seriously …” by the doctors. In a larger study of endometriosis
patients, Green et al. were able to show that these are not just isolated cases. In
this study, more than half the respondents (59.6 %) said that they had not been taken
seriously by doctors or were told that everything was fine [34]. These results are consistent with those of other studies (e.g. [17], [35], [36]). As part of other studies, it will have to be clarified to what extent this is
– at the societal level – a manifested misinterpretation on the part of doctors or
a problem in the area of doctor-patient communication, in order to then develop and
implement appropriate action.
A further aspect of the doctor-patient relationship was broached in Ballardʼs study
to investigate the causes of diagnostic delays and their impact. Ballard believes
that the medical attitude of not taking patients seriously and trivialising their
condition is a reason that diagnoses are somewhat delayed. However diagnosis is a
liberating moment, especially for women who have suffered with pain and other problems
for many years [37]. The delay in diagnosis identified in this study was 7.8 years on average, and responses
from 17 women who call for quicker diagnosis confirmed the assumption that women must
still suffer from their symptoms for a long time before their illness is recognised.
It can also be seen from the results that some of the patients hold the ignorance
of the doctors responsible for their late diagnosis. In this context, demand for quicker
referral to suitable doctors and for more specialists can be derived from the study
material. As a consequence, Hudelist et al. and Ebert et al. see a need to intensify
the events within the framework of training and continuing education on endometriosis
in order to improve the care of women suffering from the disorder [21], [38]. Gynaecologists especially, and also doctors from general medicine, gastroenterology
and urology, who come into contact with patients suffering from endometriosis because
of their symptoms should be considered here [38]. In addition to teaching diagnostic and therapeutic possibilities, the main objective
would be to raise awareness among physicians to actually consider endometriosis as
a differential diagnosis. The development of a good doctor-patient relationship requires
far more than just treatment, patient education and counselling by doctors. Doctors
should understand the impact of a disease on the lives of their patients in order
to jointly develop a customized treatment plan with them. Additive or alternative
therapies (TCM, acupuncture, homeopathy, etc.) should also be offered, as it has been
shown that these are in demand by those affected and providing alternatives to conventional
medicine can be used to improve the doctor-patient relationship.
Conclusion for Clinical Practice
Conclusion for Clinical Practice
Endometriosis is a difficult and complex disorder which affects all areas of a womanʼs
life. In terms of coping with the disorder, endometriosis is distinctive as women
have to deal with a high degree of taboos and prejudices as well as a lack of knowledge
in society. For this very reason, the doctor-patient relationship, the interaction
with patients and the subject of coping with the disorder should return to the centre
of attention in clinical settings. Knowledge of mechanisms, forms and influencing
factors on coping with the disorder are essential. This could not only guarantee better
healthcare, increased patient satisfaction, prevention of misunderstandings between
doctor and patient and promotion of patient compliance, but improvements from an economic
perspective could also be achieved. The establishment of these topics has already
taken place at medical school, and information events regarding this should be offered
for practising doctors.
