1 Institute for Anthropology, University of Vienna, Althanstrasse 14 and 2 University Clinic for Gynecology and Obstetrics, Department of Endocrinology and Reproductive Medicine, University of Vienna, Währinger Gürtel 1822, A-1090 Vienna, Austria
3 To whom correspondence should be addressed. Email: sylvia.kirchengast{at}univie.ac.at
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Abstract |
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Key words: ethnicity/infertility/Moslem immigrants/polycystic ovarian syndrome/socio-cultural aspects
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Introduction |
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PCOS can be observed in women of different ethnic origin all over the world. It is estimated that up to 20% of women (Polson et al., 1988) may be affected by PCOS, but not all display symptoms, seek medical assistance or are accurately diagnosed. However, literature about how women with different cultural background are affected in terms of their QoL or female identity due to suffering from PCOS is rare (Hashimoto et al., 2003
). The perception of PCOS and its symptoms is embodied in complex cultural systems of beliefs, values and ideals. The increasing number of immigrant women contacting infertility clinics in Europe makes a profound analysis of the impact of cultural and religious factors on PCOS symptom perception necessary. During the last decades, migration from Islamic countries such as Turkey, but also middle eastern countries such as Pakistan, to Central Europe increased, leading to special problems for infertile Islamic women who consulted European infertility clinics (Zurayk et al., 1997
). In this study, we focused on women who suffered from PCOS and sought medical assistance for infertility at an Austrian university clinic. Beside Austrian women, many women with an Islamic/Moslem background, who immigrated with their families to Austria, contacted the infertility out-patient department of the Viennese University Clinic for Gynecology and Obstetrics. Therefore, the aim of the present study was to analyse the impact of ethnic/cultural background on perception of PCOS symptoms and, above all, infertility.
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Subjects and methods |
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Stature and BMI
Stature (in m) and body weight (in kg) were determined for each proband (Knußmann, 1988). For a better description of the weight status, the BMI was calculated as: weight in kilograms divided by the square of height in metres. Weight status was classified using the following BMI categories according to the World Health Organization (1995)
: thin = BMI <18.50; normal range = BMI 18.5025.00; overweight = BMI >25.00.
Body composition
All body composition analyses were performed in the University Clinic of Radiology. Dual-energy X-ray absorptiometry (DEXA; Hologic 4000) was used to measure bone, lean and fat mass (Blake and Fogelmann, 1997).
Body fat distribution
For a better description of the sex-specific body fat distribution, the waist to hip ratio (WHR) as well as the fat distribution index (FDI) were calculated: WHR = waist girth (in cm)/hip girth (in cm). A WHR value 0.8 was defined as an android or male fat distribution; a WHR value <0.8 was interpreted as the gynoid or female body fat distribution (Lefebvre et al., 1997
). The FDI was calculated as follows: FDI = upper body fat mass in kg/lower body fat mass in kg. A fat distribution index <0.9 indicates a gynoid fat distribution, i.e. the fat mass of the lower body surpassed the fat mass of the upper body. A FDI >1.1 defines an android fat distribution, i.e. the amount of fat tissue of the abdominal region surpasses the fat mass of the lower body. An FDI between 0.9 and 1.1 is classified as an intermediate stage of fat distribution (Kirchengast et al., 1997
; Kirchengast and Huber, 2001
).
Hormonal levels
The following hormones were examined: FSH, LH, 17-estradiol (E2), progesterone, prolactin, testosterone, androstendione, dehydroepiandrosterone sulphate (DHEA-S) and sex hormone-binding globulin (SHBG). All the examined blood samples were collected at the beginning of the infertility therapy when the PCOS women were not taking any medications. Quantitative determination of the hormone levels was carried out at the central hormone laboratory of the Viennese University clinic.
Procedure
All women with diagnosed PCOS consulting the infertility out-patient department were asked to participate in the present study, and 58% of the Austrian women and 69% of the immigrant women who were asked, refused to participate. Therefore, we have to be aware that this sample represents a highly selected group of women and therefore the interpretation of the results is limited. After the extensive medical examination, including body composition analyses and hormonal status, all women suffering from PCOS were given a questionnaire. Women suffering from other endocrine disorders such as thyroid dysfunction, Cushing's disease, hyperprolactinaemia or diabetes were excluded from further analyses. Two women whose German was very poor completed the questionnaire together with an interpreter who could translate all the questions correctly. It took 2030 min to fill in the whole questionnaire. Information on the following factors was collected with the help of the questionnaire.
Socio-demographic and lifestyle factors
The age, nationality, birthplace, mother tongue, religion, time since migration to Austria, education, profession, occupation, number of brothers and sisters, and marital status of the examined PCOS women were ascertained. Also some lifestyle factors such as smoking habits, alcohol consumption or sporting activities were determined. Information regarding birthplace, mother tongue and religion were used to define two subsamples (see below). Education and profession were used as indicators of social class. In the present study, only the influence of socio-cultural (religious) background on health-related QoL was analysed.
Menstrual history
Menstrual factors such as cycle length (minimum/maximum), cycle irregularities, the duration of menstrual bleeding or the absence of bleeding without being pregnant were examined. Also, questions regarding premenstrual or menstrual pains were put to the PCOS women.
Health-related quality of life
In order to analyse the individual QoL in the affected women, Cronins health-related QoL questionnaire was used (Cronin et al., 1998). This questionnaire was developed to measure the individual QoL in affected women. According to Cronin et al., the assessment of the health-related QoL may add vital information to the evaluation of treatment effectiveness and so may lead to an optimal treatment of each affected woman. For the development of this questionnaire, a pool of 182 items which are potentially relevant for women suffering from PCOS were identified in semi-structured interviews with PCOS patients, a survey of health professionals working closely with PCOS women and a literature review. Five factor groups were defined: emotions (psychological problems, depression), hirsutism (indicators of hyperandrogenaemia), body weight (overweight fat patterning), menstrual problems (amenorrhoea, oligomenorrhea) and infertility. The complete questionnaire contains 26 questions regarding the five factor groups. For a more extensive description of the development of the questionnaire, see the original paper (Cronin et al., 1998
). The questions are answered by the PCOS patients on a 7-item Likert scale [from no problem (1) to extreme problem (7)]. According to recent studies (Jones et al., 2004
), the questionnaire represents a reliable instrument for measuring the health-related QoL in women with PCOS. However, the validity of the questionnaire could be improved by incorporating a dimension relating to acne into the instrument (Jones et al., 2004
).
Socio-cultural and ethnic subgroups
According to the socio-demographic factors (nationality, birthplace, mother tongue, religion and time since migration to Austria), the PCOS women were divided into two socio-cultural and ethnic subgroups: so-called Austrian women, and immigrants with a Moslem/Islamic cultural background originating predominantly from Turkey and the near East. Socio-cultural background was linked to religion, in this study having grown up as a Muslim versus as a Christian (or Roman Catholic). There were 35 Austrian and 14 Moslem immigrant women. Austrian women were nearly exclusively of Austrian origin. Only a few women were born in neighbouring countries such as the Czech Republic. However, these women declared themselves to be Austrian. All those women from Central Europe (Austria and neighbouring countries) had grown up in a Christian family background (97% Roman Catholic). None of the Moslem immigrant women was born in Austria and non of them considered herself as Austrian. At the time of investigation, they had been living in Austria for 39 years. Regarding socio-economic factors, the two groups differed in educational level and in occupation. The length of education in general was greater among the Austrian women. However, in both groups, >20% had a university entrance qualification (25% in the Austrian group and 21.4% in the immigrant group). Regarding occupation, 25% of the Austrian women declared themselves as housewives without an occupation, while this was true of 45% of the immigrant women; however, this difference may be due to differences in social and religious background. In general, the probands of both groups can be classified as middle class women in Vienna. Regarding the duration of the desire for children, there was no significant difference between the two proband groups.
Statistical analyses
The statistical analyses were carried out using SPSS Version 11.0 for Windows (Microsoft Corp.) (Bühl and Zöfel, 2001). After computing descriptive statistic (means, median, SDs, etc.), group differences were tested regarding their significance using MannWhitney test or 2-test. Furthermore, a binary logistic regression analysis was performed in order to test the impact of socio-cultural background on health-related QoL (Austrian women = 1, immigrant women = 2).
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Results |
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Discussion |
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First it should be mentioned that undergoing infertility therapy at an Austrian medical clinic, which certainly is demanding for everyone, is probably even more stressful for Moslem immigrant women than for European/Austrian women. Apart from all the pressure to have children from the whole family, Moslem immigrant women often do not speak German very well and need an interpreter to understand and make themselves understood correctly by the doctors. It is sometimes quite difficult for the women to give their whole medical history because these interpreters are often the husbands or other relatives such as younger sisters to whom the women will not tell all their private secrets and who perhaps do not understand what is being discussed. However, having a qualified interpreter or advocate is very important as there will be embarrassing questions and a lot of explanations (Wakely et al., 2000) during the medical examinations. Because of the strict sex segregation in Islam, Muslim women would be feeling guilty and suffer from spiritual pain if this taboo is broken (Zuraky et al., 1997
). Therefore, it would be best if the vaginal examination were to be carried out by women only (Wakely et al., 2000
), which is not always possible at the clinic. Because many of these religious needs are often neglected in modern Western society clinics and because of the language difficulties, the stress for women from an Islamic background undergoing medical treatments is increased compared with that of Austrian women.
Regarding the analyses of the results of Cronin's health-related QoL questionnaire (Cronin et al., 1998) for PCOS patients, it turned out that Moslem immigrant women showed greater personal problems with PCOS than Austrian women; in particular suffering from infertility makes Moslem women feel great despair. Even when infertility in Cronin's QoL questionnaire is in the first position out of all problems resulting from PCOS in both socio-cultural groups, women with an Islamic background rate it as nearly a twice as great a problem for them than Austrian women. However, it may be assumed that the Muslim immigrant women are not a homogeneous group regarding ethnicity and migrant status, and religious values may vary among this proband group. Furthermore, it is not the aim of the present study to stereotype Muslim people. However, some socio-cultural generalizations are possible: the social pressure to have children shortly after marriage is strong in the Islamic world (Zuraky et al., 1997
; Husain, 2000
; Nahar et al., 2000
; Guz et al., 2003
; Fido, 2004
). Islam unequivocally emphasizes high fertility, and Moslims believe that children are gifts from Allah and that it is their religious duty to multiply and populate the earth (Husain, 2000
; Schneker, 2000
). Islam requires procreation, therefore infertility is invariably a taboo (Serour et al., 1991
; Wakely et al., 2000
). According to Winkvist and Akhtar (2000)
, many Islamic Pakistani women feel strongly that their childbearing pattern influences the way people treat them; they are more respected in the family when they have children. Without children, they do not feel like a real woman (Winkvist and Akhtar, 2000
; Penn and Lambert, 2002
; Guz et al., 2003
). Guz et al. (2003)
reported that the reaction of the family and social group that Turkish infertile women are faced with plays an important role in the development of certain psychiatric symptoms.
There is also a significant difference in the perception of menstrual irregularities between Austrian and Moslem immigrant PCOS women. Islamic women say that menstrual irregularities are also quite a big problem for them, whereas Austrian women do not rate them as such a big problem. Menstrual irregularities, i.e. no regular cycle and sometimes even no menstrual bleeding without the use of medication, are strongly connected with infertility, and because infertility is a bigger problem for Moslem immigrant women, it is clear that they also rate their menstrual irregularities a bigger problem than Austrian women.
It is remarkable that Austrian women rate overweight (BMI >25) as their second largest problem after infertility, whereas Moslem immigrant women put overweight problems in the lowest ranking of the problems arising from PCOS, even though a higher percentage (66%) of immigrant women than Austrian women (48%) were affected by overweight. Furthermore, the absolute and relative amounts of body fat were higher among immigrant women (although not significant). This was also true of the FDI, indicating a higher tendency towards android fat patterning among immigrant women. Android fat pattering, indicating a higher amount of upper body fat in comparison with lower body fat, is a typical symptom of PCOS, even among lean PCOS patients (Kirchengast and Huber, 2001). It is well documented that android fat pattering is considered as unattractive among the majority of cultures listed in the human relation area files (HRAFs) (Brown, 1991
). Therefore, android fat pattering is assumed to be unattractive in Western culture as well as in Islamic societies. However, although the dimension of the problem is nearly the same in both groups, i.e. they both judge overweight as a significant problem for them, overweight was the second largest problem for the Austrian women, while it was rated last in the problem ranking by the immigrant women. An extremely slender beauty ideal is typical for all Western industrialized countries and it certainly increases the problem of overweight and obesity in women affected with PCOS. However, Moslem immigrant women not only rate menstrual irregularities and infertility but also hirsutism and emotional problems of PCOS (probably strongly linked to infertility) a bigger problem than being overweight, whereas European women only perceive their unfulfilled desire for children as a bigger personal problem.
We can see that the symptom perception of PCOS, the most common endocrine reason for female infertility, varies markedly according socio-cultural factors, although the symptomatology shows no culture-typical differences. Cultural traditions, culture-typical gender identity and religious beliefs influence the health-related QoL of PCOS patients. Distress is discussed to have a worse effect on infertility treatments and to diminish the success of reproductive medicine (van Balen and Trimbos-Kemper, 1993; Boivin, 2003
; Kupka et al., 2003
). Therefore, health professionals in every field should be encouraged to be sensitive to the ethnicity, religious and cultural background of their patients. This sensitivity is particularly important in the area of reproductive medicine in general and in infertility in particular.
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Submitted on January 19, 2004; resubmitted on April 26, 2004; accepted on July 2, 2004.