Seeking medical help for subfecundity: a study based upon surveys in five European countries*t:l:

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1 FERTILITY AND Copyright 1996 American Society for Reproductive Medicine Printed on acid-free paper in U. S. A. Seeking medical for subfecundity: a study based upon surveys in five European countries*t:l: Jl'lrn Olsen, M.D. Marion Kuppers-Chinnow, M.D.II Angela Spinelli, M.D.~ The Danish Epidemiology Science Centre, Department of Epidemiology and Social Medicine, Aarhus, Denmark, Nordig; Institute for Health Research and Prevention, Hamburg, Germany; and Istituto Superiore di Sanita, Rome, Italy Objective: To study care-seeking behavior for infertility treatment in different European countries. Design: Multicenter surveys of randomly selected women in the child bearing age. Setting: Five countries participated in the study: Denmark, Germany, Italy, Poland, and Spain. Data were collected from 1991 to 1993 as part of a concerted action. Patients: Population-based samples of women 25 to 44 years of age. The sample sizes ranged from 442 women in Poland to 2,729 in Italy. Participation rates ranged from 54% in Germany to 87% in Denmark. Data were collected by means of a highly structured questionnaire used at a face-to-face interview. Main Outcome Measures: Waiting time to pregnancy, time, and type of treatment for infertility. Results: Less than half of the infertile couples seek medical in most European countries. The lowest proportion seeking was found in Poland and the highest in Denmark. Conclusion: The increasing demand for infertility treatment is expected to continue, because the potential unmet need is outspoken in most European countries. Fertil Steril 1996;66: Key Words: Infertility, care-seeking, health service research Infertility often is defined as "the inability to establish a pregnancy within a specific period of time, usually more than one year, among couples of repro- Received May 24, 1995; revised and accepted February 5, * Supported in part by The European Union (The Medical and Health Research Programme). The activities of the Danish Epidemiology Science Centre are financed by a grant from the Danish National Research Foundation. t The European Studies of Infertility and Subfecundity is an European Union Concerted Action. Members of the project management group are: Svend Juul, M.D., Aarhus, Denmark (project leader); Wilfried Karmaus, M.D., Hamburg, Germany; J\'lrn Olsen, M.D., Aarhus, Denmark; Tony Fletcher, M.Sc., London, United Kingdom; Francisco Bolumar, M.D., Valencia, Spain; Irena Figa-Talamanca, M.D., Rome, Italy; Patrick Thonneau, M.D., Paris, France; and Stephanos Pantelakis, Athens, Greece. * Responsible for collection of national data are Wilfried Karmaus, M.D., Hamburg, Germany; Luigi Bisanti, M.D., Milan, Italy; Angela Spinelli, M.D., Rome, Italy; Svend Juul, M.D., Aarhus, Denmark; Francisco Bolumar, M.D., Valencia, Spain; and RomuaId Biczysko, dr.hab. Poznan, Poland. Reprint requests: J\'lrn Olsen, M.D., The Danish Epidemiology ductive age who are having sexual intercourse without contraception" (1). It is difficult to estimate the prevalence of infertility in populations and to compare estimates from different populations and different time periods. First, the difficulties lie in the intentional part of the definition, because only a fraction of couples having sexual cohabitation without contraception are trying to become pregnant and the use of contraception is not always a well-defined behavior. Many couples use contraception infrequently or use unsafe methods because of religious or economic reasons. Some couples use "half-hearted" pregnancy planning. Science Centre and The Steno Institute of Public Health, Department of Epidemiology and Social Medicine, University of Aarhus, N\'lrrebrogade 44, Bygning 2C, 8000 Aarhus C, Denmark (FAX: ). II Nordig, Institute for Health Research and Prevention, Hamburg, Germany. ~ Istituto Superiore di Sanita, Rome, Italy. Olsen et al. Medical for subfecundity 95

2 Infertility is a couple experience and can be recorded only by asking pertinent questions, preferably to the female partner. Thus, standardized and validated questionnaires are needed for comparable studies. Unfortunately, high quality epidemiological studies on reduced fecundity have been conducted in few countries, and the magnitude of the problem is unknown in many countries. From the United States, however, there is indirect evidence indicating that the prevalence of subfecundity has not changed over the last 10 to 20 years (2, 3). Nobody doubts, however, the importance of the problem. Worldwide, it is estimated that between 50 and 80 million couples of the present population have experienced infertility (4). In Europe, the recent tendency to postpone marriage and childbearing might influence the completed couple fertility. In fact, the only sociodemographic variable that appears to be associated consistently with infertility is maternal age (5). This also could be related to the increasing time available for accumulating exposure to potential risk factors of subfecundity, such as smoking and pelvic inflammatory diseases. Some harmful exposures are perhaps more frequent now than before. More women have a paid job and may be exposed more to occupational hazards at the workplace, and the average number of sexual partners probably has increased in some countries. To study the variation in Europe, a European Concerted Action was established in 1989 and two types of surveys were carried out between 1991 and Only data from the population survey are used in this paper. The main purpose of the studies was to estimate the frequency of subfecundity and infertility in as many European countries as possible and to evaluate the influence of environmental exposures. Some questions on the use of infertility services also were included in the questionnaires. In fact, many industrialized countries experience an increasing demand for infertility treatment, which could reflect an increasing incidence of infertility. The demand for infertility services certainly is related to access to and cost of treatment and cultural differences in health care behavior. In a British study (6), involuntary childlessness was found in 3.3% of women born in 1950 and 4.5% among those born in 1935, whereas 6.8% of women born in 1950 had consulted a specialist about infertility as compared with 3.6% of those born in The number of infertility-related consultations also has increased by approximately 50% in the United States between 1968 and 1982 (7). New technologies probably have given some hope for better results, and it is expected that even more people will seek in the years to 96 Olsen et al. Medical for subfecundity come, despite the lack of well-documented treatment results (8, 9). However, it is known from past studies that far from all infertile or subfecund couples seek. In a Danish study from 1979, less than half of the couples who had tried unsuccessfully to become pregnant for at least 2 years had sought medical. If they already had at least one child, even fewer sought medical (10). Similar results have been found in the United States (11) and in Aberdeen, Scotland (12, 13). European health care systems need to plan their activities to provide adequate diagnostic and treatment facilities for couples with low fecundity and they have to invest in prevention, research, and health education. To do so, quantitative information is needed. The health care system will need to know the frequency of low fecundity in the population. They also need to know the number of couples not seeking medical despite unsuccessful attempts to have a child. The main aim of this paper is to estimate the proportion of infertile couples who seek medical in different European countries and to describe the treatment given to those who do seek. The selected European countries were included because they represent different cultures concerning lifestyle, religion, female participation in the workforce, and differences in health care systems. A Greek and Portuguese sample originally was included but they failed to receive national support for the study. Data collection in Greenland was given up because of poor response rates. MATERIALS AND METHODS A survey was conducted in five European countries between August 1991 and February Although the unit of analysis was a couple, women were the informants of the couples' experiences because they were considered to give the most reliable information. Population-based samples of women aged 25 to 44 years were defined using population registers and electoral rolls, according to what was technically and legally possible in the various countries. All centers had to follow the case protocol, which indicated that random sampling in a geographically well-defined population should be done. A total of6,630 women were interviewed and participation rates varied from 54% in Germany to 88% in Poland. Table 1 describes regions, sampling principles, and participation rates. Data were collected at personal interviews using a validated and structured questionnaire translated into each national language. The questionnaire was developed in three workshops in which existing U.S. and European Fertility and Sterility

3 Table 1 Participation Rates and Sampling Methods in the Different Countries Denmark Definition of Population Germany sampling frame register Population register Primary sample 1,184 2,850 Not located Available 1,184 2,850 Participants 1,028 1,531 Participation rate (%) 86.8% 53.6% North Italy South Italy Spain Census Electoral Poland 1991 register rolls Electoral rolls census 2,804 1, , ,574 1, ,294 1, % 78.7% 88.4% 69.6% Information on Excess old and Answers on basic question Age distribution Excess old Age distribution No data nonresponders ex-married from 723 of 1,323 as responders women of respondents available women nonresponders: no Excess never- as general difference in no. of pregnant population pregnancies, children, marital status, more nonresponders were employed Regions Aarhus Rostock (rural) Milano (urban) Terni (urban) Poznan (urban) Valencia (urban) Hamburg (urban) Brescia (urban) Norma (rural) (urban) Steinburg (rural) Como (urban) Taranto (urban) Freiburg (urban) Pavia (urban) questionnaires were discussed. A draft version then was pilot tested in several countries over 2 years and finally went through translation and back translation before being used. Each interview took approximately 60 minutes. All interviewers were trained according to a common protocol. Only female interviewers were used and the core questionnaire was the same in all countries. The key questions used in the paper were related to the longest waiting time and to the type of any care seeking up to the time of interviewing. The waiting time question was phrased "Have you ever had a time interval, lasting at least 6 months, having intercourse without doing anything to avoid pregnancy?," if yes, "How long was the duration of the longest such time?". The care-seeking question was phrased "Have you or your partner ever sought any medical because of problems with getting pregnant?". This question was followed by a number of questions related to the type of care received. The study was approved by the National Ethical Committees in the participating countries. RESULTS Table 1 shows the study characteristics from each center. The women in the different countries were about the same age at the time of interview (data not shown). There were more nulliparous women in the Danish and Italian sample (Table 2). More than 50% had one to two children in all samples (75% in the Polish sample). Cohabitation habits were rather similar in all countries. The largest proportion of women living alone was in Denmark. The highest proportion of sterilized women was observed in Ger- many (12%) and among males in Denmark and Spain (10%). More women had started their reproductive history before 20 years of age in Germany and more Italian women had delayed their first pregnancy till after 30 years of age. The biggest difference in the number of liveborn babies was recorded in East and West Germany. Only 31% had had no babies in the former West Germany compared with 53% in the former East Germany. A similar, albeit less marked difference was found between South and North Italy. Mothers were approximately 4 to 5 years younger at their first pregnancy in East Germany compared with those in the West. No males were sterilized in the sample from East Germany. The variation in cumulative care-seeking behavior in Europe is shown in Table 3. Even among infertile couples, as defined by ~ 13 months of cohabitation without using contraceptives, 19% had not sought medical ever in Poland compared with between 38% and 51% in other countries. The differences in care-seeking behavior were, however, smaller among infertile couples who had planned a pregnancy. Sixty percent sought medical in Denmark and 39% sought in Poland. In all countries, some couples sought even within the first 6 months of trying to become pregnant: Denmark 19%, Germany 21%, Italy 30%, Poland 6%, and Spain 4%. More couples with infertility problems sought in West Germany and South Italy compared with East Germany and North Italy (data not shown). Although data in Table 3 refer to any care seeking up to the time of interviewing, Table 4 presents careseeking data for the first pregnancy and for the most Olsen et al. Medical for subfecundity 97

4 Table 2 Demographic and Reproductive Characteristics of the Samples* No. of women No. oflive borns o lto 2 3 to 4 5+ Mean No. of women in a steady sexual relationship At interview Previous Never No. of women sterilized at the time of interview No. of male partners Sterilized partner Age at the end of the first pregnancy (y)t <20 20 to No. of women * Values in parentheses are percentages. Denmark (n = 1,028) 375 (36.5) 541 (52.6) 109 (10.6) 3 (0.3) (80.8) 165 (16.1) 32 (3.1) 44 (4.3) (10.1) 89 (12.9) 522 (75.8) 78 (11.3) 689 (100) Germany Italy Poland Spain (n = 1,531) (n = 2,729) (n = 442) (n = 900) 413 (27.0) 934 (34.3) 57 (12.9) 232 (25.8) 882 (57.6) 1,617 (59.3) 331 (74.9) 531 (59) 221 (14.4) 168 (6.2) 52 (11.8) 124 (13.8) 15 (1.0) 8 (0.3) 2 (0.5) 13 (1.4) ,361 (88.9) 2,389 (87.5) 384 (86.9) 771 (85.7) 157 (10.3) 228 (8.4) 39 (8.8) 62 (6.9) 13 (0.8) 112 (4.1) 19 (4.3) 67 (7.4) 176 (11.5) 48 (1.8) 4 (0.9) 63 (7.0) 1,108 1, (6.0) 6 (0.3) 0(0.1) 60 (10.1) 195 (16.8) 211 (11.5) 38 (9.7) 53 (7.8) 841 (72.6) 1,363 (74.4) 334 (85.2) 575 (84.6) 122 (10.5) 259 (14.1) 20 (5.1) 52 (7.6) 1,158 (100) 1,833 (100) 392 (100) 680 (100) t Based upon women with at least one pregnancy not ending in an induced abortion. Table 3 Care Seeking for Fertility Problems and Duration of Sexual Relationship Without the use of Contraceptives (Waiting Time) by Country Country Denmark Germany Italy Poland Spain Waiting time (mo)* > (35.9) 97 (51.1) (32.4) 167 (43.2) (26.0) 150 (37.9) (15.2) 31 (19.1) (29.6) 54 (43.2).",12Pt (62.4) (57.4) (51.0) * Values in parentheses are percentages. t Couples who had tried to become pregnant for > 12 months and who were planning a pregnancy during that time. * This number excludes women who became pregnant while using contraception or who never had sex without using contraceptive methods for the given time period. 98 Olsen et ai. Medical for subfecundity (38.8) (52.7) recent pregnancy only. After a waiting time of ;;:,: 13 months, approximately one half had sought in most countries, except for Poland (29%) before their first pregnancy. For secondary infertility (the couple had had at least one birth), less than half sought in all countries and less than one third in most countries, again with the lowest percentage in Poland (7%). Health care is organized differently in the countries investigated. Most couples seek directly from specialists, except in Denmark, where 82% first went to general practice for. In all countries was sought mainly by couples (54%, ranging from 46% in Germany to 67% in Poland) or by women (40%, ranging from 27% in Denmark to 49% in Spain). It was rare for males to seek alone. On average, the completed treatment lasted for 2 years, with 30% of the couples treated for >5 years. For couples who sought, Table 5 shows the investigations and treatments they had received among those listed in the questionnaire. Temperature charts and sperm tests seem to be used as first screening for fertility problems. Roentgenogram of the uterus and tubes (hysterosalpingogram) is used quite frequently in most countries except Germany. Ultrasound examinations and hormonal treatments appear to be less frequent in Denmark than in other countries. The proportion of couples who tried to adopt was low and similar in all investigated countries, from 1.2% in Spain to 2.5% in Germany among all in the sample. Seventeen percent of them succeeded. The proportion trying to adopt was higher in couples who sought for fertility problems (ranging from 7.5% in Italy to 11.2% in Denmark). Fertility and Sterility

5 Table 4 Care Seeking for Fertility Problems and Duration of Sexual Relationship Without the Use of Contraceptives by Country* No. of couples with waiting time No. who Country of~6 mo sought t First pregnancy Denmark (27.6) Germany (27.0) Italy (32.1) Poland (18.3) Spain (26.0) Most recent pregnancy Denmark (20.0) Germany (19.2) Italy (21.5) Poland 62 3 (4.8) Spain (23.5) * Includes only couples who were planning a pregnancy. t Values in parentheses are percentages. No. of couples with waiting time No. who Waiting time till of >12 mo sought seeking :j: (53.3) 19.3 ± (46.1) 13.2 ± (53.7) 10.3 ± (29.1) 20.9 ± (47.9) 13.5 ± (40.0) 12.8 ± (27.5) 9.1 ± (24.2) 14.1 ± (7.3) 15.4 ± (34.3) 18.9 ± 25.3 :j: Includes all who sought, overall waiting time was calculated at the time from stopping use of contraceptives until a recognized conception. Most recent pregnancy for couples with at least two pregnancies. mo DISCUSSION In the last 20 years an increase in treatment and advice on infertility have been reported by many authors (3, 6, 7). There is, however, no evidence that subfecundity and infertility rates are rising. Estimates of these phenomena based upon diagnosed cases are threatened seriously by selection bias, due to only partly known mechanisms (10, 11). In this study, random samples totaling 6,630 women between 25 and 44 years of age in five European countries were interviewed. Less than half of the couples who qualified for further investigation (inability to conceive after > 12 months of unprotected intercourse) sought for infertility in all Table 5 Investigations and Treatments for Couples who Sought Help for Fertility Problems by Country Investigations, treatments Denmark Germany Italy Poland Spain % % % % % Sperm test Ultrasound examination Hysterosalpingogram Hormonal examination Postcoital test Temperature charts Laparoscopy Hormonal treatment Turbal investigation Curettage Surgery Artificial insemination IVF Other No of women responding (multiple answers possible) centers (40% sought in the total sample). Among couples who planned a pregnancy, <60% sought in all countries except Denmark (54% sought in the total sample). These results are similar to what has been found in the United States (14). There is a large number of potential patients and, in the near future, the development of new methods of diagnosis and treatment probably will result in a further increase in the proportion of couples seeking. Health care systems in Europe must be prepared to cope with this demand and consequently to plan appropriate services. Data were collected according to a standard protocol, using the same questionnaire and all interviewers were trained according to the same protocol. Response rates are acceptable, except in Germany. It is, however, likely that some of the variations are due to differences in reporting or selection bias related to nonresponders. On the other hand, most of the differences are large and probably real. Certainly not all infertile couples will seek medical or nonmedical. It is documented that the estimated need is greater than the demand, suggesting that there is either an unmet need and/or that some infertile couples do not want medical (15). The medical diagnoses and treatments take time and may have severe side effects, especially concerning self-esteem and quality oflife (16-18). New clinical methods have given hope to many infertile couples despite the lack of proper evaluation (8, 9), but the price they have to pay is often high, not only in financial terms but also in terms of suffering and risk of side effects. In this study, couples who sought were examined and/or treated for 2 years on average, and 30% of them were treated for >5 years. This study does show some differences in care- Olsen et al. Medical for subfecundity 99

6 seeking behavior. Most countries use specialists as primary facility, but Denmark is a marked exception. Differences between the provisions of the national health systems probably explain why the proportion of couples seeking from specialists varies from 8% in Denmark, where first consultations usually are with general practitioners, to 93% in Germany. Poland is the only country where a substantial proportion of couples (23%) uses community clinics or family planning clinics. Approximately 10% ofthe couples who sought for infertility also applied for adoption, but this study is not large enough to detect differences in adoption practices. The decision to apply for adoption does not only reflect the desire to have a child, but also the perceived probability of success. Efficient methods of contraception developed throughout the past 25 years have enabled couples to postpone having children until they believe they are ready to commence parenthood. Little attention has been given during this period to the couples who, having delayed starting a family, find that they cannot conceive when they want to. Given that the risk of infertility increases with maternal age, it is not implausible to suppose that subfecundity has increased during this period and can be expected to remain a significant public health problem. Moreover, being more used to the idea of planning the number and timing of their children, couples do not want to wait too long. This study shows a mean waiting time of approximately 12 months before seeking. In the foreseeable future, public services will be burdened financially by this problem. It also is hoped that a greater concern for infertility will increase interest in preventing the condition. In fact, it has been estimated that one third of all infertility cases are caused by potentially preventable infections (19). REFERENCES 1. Sciarra, JJ. Infertility: a global perspective on the role of infection. Ann NY Acad Sci 1991;626: Mosher WD. Reproductive impairments in the United States, Demography 1985;22: Mosher WD, Pratt WF. Fecundity and infertility in the United States, Adv Data Vital Health Stat 1990; 192: Rowe PJ, Farley TMM. WHO special programme of research development and research training in human reproduction. Biennial report Geneva: World Health Organization, Olsen J. Cigarette smoking, tea and coffee drinking, and subfecundity. Am J Epidemiol 1991; 133: Aral SO, Cates W. The increasing concern with infertility. Why now? JAMA 1983;250: Collins JA, Wrixon W, Janes LB, Wilson EH. Treatmentindependent pregnancy among infertile couples. N Engl J Med 1983;309: Lilford R, Dalton ME. Effectiveness of treatment for infertility. Br Med J 1987;295: Johnson G, Roberts D, Brown R, Cox E, Evershed Z, Goutam P. Infertile or childless by choice? A multipractice survey of women aged 35 and 50. Br Med J 1987;294: Rachootin P, Olsen J. Social selection in seeking medical care for reduced fecundity among women in Denmark. J Epidemiol Community Health 1981;35: Hirsch MB, Mosher WD. Characteristics of infertile women in the United States and their use ofinfertility services. Fertil Steril 1987;47: Templeton A, Fraser C, Thompson B. The epidemiology of infertility in Aberdeen. Br Med J 1990;301: Gunnell DJ, Ewings P. Infertility prevalence, needs assessment and purchasing. J Public Health Med 1994; 16: Wilcox LS, Mosher WD. Use of infertility services in the United States. Obstet GynecoI1993;82: Page H. Estimation of the prevalence and incidence of infertility in a population: a pilot study. Fertil Steril 1989;51: Oldereid NB, Rui H, Purvis K. Male partners in infertile couples. Personal attitudes and contact with the Norwegian health service. Scand J Soc Med 1990;18: Lalos A, Lalos 0, Jacobsson L, von Schoultz B. Psychological reactions to the medical investigation and surgical treatment of infertility. Gynecol Obstet Invest 1985;20: Sandelowski M. Sophie's choice: a metaphor for infertility. Health Care Women Int 1986;7: Wagner MG, Stephenson PA. Infertility in industrialized countries: prevalence and prevention. Soz Praventivmed 1992;37: Olsen et al. Medical for subfecundity Fertility and Sterility