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Marriage rate and number of children among young adults with insulin-dependent diabetes mellitus in Japan
Diabetes Research and Clinical Practice 49 (2000) 135 – 141 www.elsevier.com/locate/diabres
Marriage rate and number of children among young adults with insulin-dependent diabetes mellitus in Japan Shigeo Aono a,*, Nobuo Matsuura b, Shin Amemiya c, Yutaka Igarashi d, Yasuko Uchigata e, Tatuhiko Urakami f, Kaichi Kida g, Nozomu Sasaki h, Yuko Miki i, Shigeki Miyamoto j a
Department of Pediatrics, Osaka City Uni6ersity Medical School, 1 -4 -3 Asahimachi, Abenoku, Osaka 545 -8585, Japan b Department of Pediatrics, Kitasato Uni6ersity School of Medicine, Kanagawa, Japan c Department of Pediatrics, Yamanashi Medical Uni6ersity, Yamanashi, Japan d Children’s Clinic Igarashi, Miyagi, Japan e Diabetes Center, Tokyo Women’s Medical Uni6ersity School of Medicine, Tokyo, Japan f Department of Pediatrics, Nihon Uni6ersity School of Medicine, Tokyo, Japan g Department of Pediatrics, Ehime Uni6ersity School of Medicine, Ehime, Japan h Department of Pediatrics, Saitama Medical School, Saitama, Japan i Department of Pediatrics, Tokyo Uni6ersity School of Medicine, Tokyo, Japan j Di6ision of Endocrinology, Chiba Children’s Hospital, Chiba, Japan Received 21 June 1999; received in revised form 31 January 2000; accepted 10 February 2000
Abstract The main purpose of our study was to identify the social circumstances and lifestyle of IDDM patients in Japan. The present study focused on the marriage status of both men and women with IDDM as well as the number of children of women with IDDM. A questionnaire was sent to hospitals across the country. Doctors handed it or mailed it to IDDM patients aged 18 years or older. Unsigned answer sheets were returned directly by the patients. Data on the marriage rate and number of children were obtained, and possible factors affecting these indices were assessed. One thousand and thirteen patients (354 men and 659 women) answered the questionnaire. Both men and women with IDDM were less likely to be married in comparison with age-matched Japanese. The number of children of married IDDM women in various age groups was also lower in comparison with the general Japanese female population. Several factors other than diabetes complications including job discrimination, high medical costs, and psychological pressures, were thought to be responsible for these results. © 2000 Elsevier Science Ireland Ltd. All rights reserved. Keywords: IDDM; Marriage rate; Number of children; Epidemiology; Questionnaire survey
* Corresponding author. Tel.: + 81-6-66453816; fax: + 81-6-66368737. E-mail address: [email protected] (S. Aono). 0168-8227/00/$ - see front matter © 2000 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 1 6 8 - 8 2 2 7 ( 0 0 ) 0 0 1 3 7 - 6
S. Aono et al. / Diabetes Research and Clinical Practice 49 (2000) 135–141
136
ing were also analyzed. Analysis was done with an SPSS program (Version 9.01J).
1. Introduction It is important to improve the quality of therapy and education to better the quality of life (QOL) of patients with IDDM, but it is not less important that IDDM patients marry, be employed, and lead an agreeable life as do diabetesfree persons. To make such social conditions a reality it is necessary to acquire a thorough grasp of their problems and find solutions. However, it is difficult to investigate the social and living conditions of IDDM patients at the level of individual medical institutions. To this end large-scale questionnaire surveys will have to be conducted. The present study was carried out with a view to delineating the actual conditions of IDDM patients based on a large-scale questionnaire survey and identify the problems that must be solved to improve their QOL.
3. Results
3.1. Background of patients One thousand and thirteen patients (354 men and 659 women) answered the questionnaire. The mean age of the men was 24.0 9 4.7 years (range 18.1–46.3 years) and that of the women was 24.99 5.3 years (range 18.1–49.6 years). The mean duration of diabetes was 14.295.7 years (range 1.3–29.3 years) for the men and 14.69 6.1 years (range 0.8–37.4 years) for the women. Thirty-four percent of the patients injected insulin once or twice a day and 66% did so three times or more. The percentage of patients on dialysis was 1.1% for men and 1.8% for women.
2. Research design and methods
3.2. Marriage rate
The questionnaire was created by members of Committee for Childhood Diabetes of the Japanese Society for Pediatric Endocrinology. The questionnaire was sent to our member hospitals and related hospitals across the country and was handed or mailed to patients with IDDM aged 18 years or older in 1995. Answer sheets were sent back directly from the patients without a signature. In the current study, we focused on the marriage status and the number of children among 56 questions. Several questions on items which might affect marriage status and childbear-
Both men and women were less likely to be married in comparison with age-matched data for the Japanese population (Table 1). The marriage rate of women with IDDM was significantly lower in all four age groups, including 20–39 years old, and that of men with IDDM was also lower in two age groups, including 25–34 year old. The marriage rate of men with IDDM aged from 30 to 34 years (22.0%) was relatively the lowest, being almost one third of that for the general population (65.2%). On the other hand, there were only two men and seven women who had divorced.
Table 1 Percentage of married IDDM patients in comparison with the general populationa Age group
% Women with IDDM (n)
General population (%)
% Men with IDDM (n)
General population (%)
20–24 25–29 30–34 35–39
6.3** (207) 38.2*** (170) 56.9*** (72) 52.2*** (23)
13.5 57.5 82.7 87.3
6.3 (112) 18.6** (70) 22.0*** (41) 50.0 (6)
6.2 33.0 65.2 78.1
a A nationwide survey done by the Japanese Ministry of Health and Welfare in 1995 is the source of data on the general population. n, number of patients examined. ** x 2 test PB0.01. *** x 2 test PB0.001.
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137
3.3. Number of children
4. Discussion
The number of children of women with IDDM at various ages was also compared with the number for Japanese women (Table 2) using the 1995 nationwide survey by the Japanese Ministry of Health and Welfare. The average number of children born from a women with IDDM was significantly low in three of four age groups, that is, 0.53 in 25–29 age group (P B 0.001, t-test), 0.85 in 30–34 (P B 0.001) and 1.17 in 35 – 39 (P B 0.05), whereas those of general population were 1.09, 1.75 and 2.14, respectively. In general, a greater percentage of IDDM women had no child or only one child. In the 30 – 34 age group, women with IDDM were more likely to have one child (33.3%) compared to that of general population (22.1%). None of the IDDM women had more than three children. The mean age of the first birth was 25 years (n =67); ranging from 17 to 33 years. 3.4. Factors which affect marriage rate
In this study, we found that the marriage rates of men and women with IDDM and the number of children of women with IDDM were both lower than in the general population. Various explanations might be given for these results, including diabetic complications, the quality of patient education, social and economic factors, and the cultural background. Among those factors, we focused on social and psychological aspects in this current study. In our previous study [1], we found that the estimated income of men with IDDM was lower compared to age- and sex-matched siblings. Matsushima et al. [2] reported a similar result from a case-control study in Japan. In our study [1], 36% of men and 41% of women stated that they concealed their disease at their place of employment and 21% of men and 24% of women answered that they had been rejected because they had diabetes. Job discrimination removes equal employment opportunity for patients developing IDDM at an early age. We suspect that this situation may possibly be related to a low annual income and their feeling that medical costs are very heavy. We reviewed several papers dealing with problems in obtaining employment [3–7]. Robinson et al. [3] reported on the employment experiences of young IDDM patients selected from 13 diabetic centers in Great Britain. Young adults with diabetes were significantly more likely to report having lost their jobs than their non-diabetic counterparts, and the diabetic group were more likely to report that they were unable to do the job they wanted. Songer et al. [4] studied the employment status of 158 patients with IDDM in a case control study in the USA. They concluded that there was a tendency for patients to be more likely to be rejected if they gave information on their diabetes at an employment test, but they were equally likely to be employed if their diabetes was concealed. They also reported that diabetic complications are one of the major causes of a lower income. In our study, 6.5% of men and 6.8% of women stated that they were jobless, while in general population the unemployment rate varied from 2
Among the 56 questions in the questionnaire, seven questions which might be related to the lower marriage rate and high rate of childlessness were selected. The answers were separately assessed for men and women in their twenties and thirties (Table 3). Patients who had been refused employment because of or probably because of their diabetes accounted for 35.5% (twenties) and 37.5% (thirties) of men, as well as 34.5 and 39.0% of women (Table 3(a)). Around 90% of the patients found medical expenditures something of a burden and 20% reported major problems(Table 3(b)). The percentage of patients who never suffered unpleasant comments because of their diabetes ranged from 5.7% (women in their twenties) to 19.5% (men in their thirties) (Table 3(c)). Approximately 30% of patients answered that they felt diabetes restricted them from having a relationship with the opposite sex and more than half answered that diabetes restricted school or work attendance (Table 3(d,e)). Almost all of patients worried about their diabetes getting worse and more than half of them felt that they did not always live a sensible life because it is difficult to always take proper care (Table 3(f,g)).
138
Age group (n)
20–24 IDDM (11)
None One Two Three Four or more Total (%)
25–29 General population (282)
54.5 45.5 0 0 0
43.6 44.3 11.7 0.4 0
100.0
100.0
IDDM (64)
54.7*** 37.5 7.8*** 0 0 100.0
30–34 General population (1153)
31.3 35.1 28.0 4.8 0.8 100.0
IDDM (39)
41.0*** 33.3* 25.7* 0* 0 100.0
35–39 General population (1638)
IDDM (12)
General population (1827)
11.6 22.1 47.3 17.2 1.8
25.0 33.3 41.7 0 0
5.1 11.4 51.8 27.7 4.0
100.0
100.0
100.0
a A nationwide survey done by the Japanese Ministry of Health and Welfare in 1995 is the source of data on the general population. n, number of people examined. * x 2 test PB0.05. *** x 2 test PB0.001.
S. Aono et al. / Diabetes Research and Clinical Practice 49 (2000) 135–141
Table 2 Number of children of married women with IDDM in comparison with the general populationa
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Table 3 Some factors that could possibly explain the lower marriage rate and high rate of childlessnessa Questionnaire
Women Twenties
Men Thirties
Twenties
Thirties
Occupational (a) Have you ever been refused employment because of your diabetes? (n) (331) (86) Yes (%) 23.0 25.4 Probably yes (%) 11.5 13.6 No (%) 65.5 61.0
(169) 20.1 15.4 64.5
(48) 27.1 10.4 62.5
Economic (b) Is your expenditure for the treatment of diabetes heavy? (n) (420) Very much (%) 26.4 Painful (%) 41.9 A little (%) 26.0 No (%) 5.7
(228) 20.2 41.6 25.9 12.3
(46) 10.9 26.1 43.5 19.5
(232) 6.5 40.5 41.4 11.6
(47) 4.2 46.8 36.2 12.8
(226) 4.4 18.2 77.4
(47) 8.5 31.9 59.6
(230) 15.7 34.3 50.0
(46) 13.0 37.0 50.0
(235) 26.4 37.5 32.3 3.8
(47) 25.5 51.1 21.3 2.1
(233) 6.9 9.9 50.2 33.0
(47) 4.3 8.5 61.7 25.5
(97) 23.7 35.1 29.9 11.3
Psycho-social (c) I get unpleasant comments because of my diabetes (n) (430) (100) Often (%) 9.5 12.0 Occasionally (%) 48.2 46.0 Seldom (%) 32.8 34.0 Never (%) 9.5 8.0 (d) Does your diabetes restrict your relationship with the opposite sex? (n) (420) (90) Definitely (%) 7.4 12.2 A little (%) 18.1 20.0 No (%) 74.5 67.8 (e) Does your diabetes restrict your school or work attendance? (n) (420) (92) Definitely (%) 18.1 30.4 A little (%) 35.7 31.5 No (%) 46.2 38.1 Diabetes control (f) I am worried about my diabetes getting worse (n) (433) (100) Often (%) 32.3 32.0 Occasionally (%) 37.7 39.0 Seldom (%) 26.1 24.0 Never (%) 3.9 5.0 (g) I do not always live a sensible life because it is difficult to take proper care (n) (433) (100) Totally agree (%) 7.4 6.0 Agree (%) 9.7 8.0 Slightly disagree (%) 52.9 47.0 Totally disagree (%) 30.0 39.0 a
n, number of patients examined.
140
S. Aono et al. / Diabetes Research and Clinical Practice 49 (2000) 135–141
to 4% with age. This result indicates that the rate of unemployment in patients with IDDM is slightly high compared to that of general population. Ingberg et al. [5] in Sweden reported that the employment rate was lower in IDDM patients in comparison with age and sex matched healthy persons (71 vs 85%, P B 0.05) and this difference was mainly the consequence of late diabetic complications. They concluded that IDDM affected social life only to a limited extent in the absence of severe vascular complications. From our study and the above mentioned studies, we must conclude that in the younger generation, job discrimination has still some impact upon the opportunity of employment and their income and as they become old, late diabetes complications gradually have a stronger effect on it. This kind of statistics are naturally influenced by the social and economic condition in each country and also reflect the times, therefore it is not right that data should be simply compared between countries. Actually, no international comparative study dealing with this issue was found in medical literature. But it is true that job discrimination, in what degree it may be, affects the motivation of IDDM patients to the good diabetes control. In Japan, all medical costs for the treatment of IDDM are covered by the health insurance system with the aid of public assistance up to the age of 20. After that age, most patients have to pay from 5000 to 15 000 yen monthly depending on their health insurance coverage and details of treatment. But at age 20, a considerably high percentage of IDDM patients are still college students and usually have no job. This may explain why 90% of respondents answered that medical expenditures were at least something of a burden and 20% reported major problems. In most cases, this burden is shouldered by the parents rather than the patients themselves. We are afraid that these economic pressure affect the motivation to maintain good glycemic control [8]. Songer et al. [9] reported that the frequency of medical consultation and self-monitoring of blood glucose decreases in patients with a lower income and/or without medical insurance.
As for the marriage rate, it was reported that the marriage rate of people with diabetes is comparable to that of the general population in USA [4]. On the other hand, Gafvels et al. [10] reported that the rate was lower for people with IDDM in Sweden. In Finland, Kokkonen et al. [11] also reported that diabetics were significantly more often unmarried and living in the same household as their parents compared with the controls. They also indicated that there were difficulties for the diabetic group in separating from their parents and they concluded that having diabetes delays social maturation. The patients showed a more dependent lifestyle and more separation problems. Our results also support the latter findings. Furthermore, in Japan we have to take into consideration the traditional way of thinking, symbolized by the arranged marriage, which still now occurs, although diminishing in percentage. This means that parents and other family members sometimes interfere with marriage. From the psychological point of view, we should pay attention to the findings that 30% answered that diabetes restricted them in relations with the opposite sex and that it restricted school or work attendance in over 50%. Lloyd et al. [12] from their interview of 80 young IDDM people that young adults with IDDM have more negative social experiences which may affect their feelings with regard to having close relationships. It is natural that such long-term psychological pressure may affect the motivation for self-care of diabetes by lowering their self-respect and thus induce poor control [13]. Once they develop diabetic complications, then their quality of life is impaired and this may lower the marriage rate. As for the high rate of childlessness in women with IDDM, it is suspected that it comes from various factors, such as medical and/or economic restrictions, fear of the progression of diabetic complications, and the influence of spouse, parents and physician. Further investigation is necessary to determine which reason is the most important. Ahlfield et al. [14] studied the impact of IDDM on marriage and childbearing in 50 young adults with IDDM. None of their subjects had made a conscious decision to remain unmarried, but 14 out of 50 had decided not to have
S. Aono et al. / Diabetes Research and Clinical Practice 49 (2000) 135–141
children. These findings clearly suggest that there is an impact of diabetes on marital status, marital life, and childbearing. Physicians and other health professionals need to be aware of these implications of the disease when counseling young diabetics. The fact that the frequency of IDDM in Japan is considerably low compared to other countries may play some role in the rather poor understanding for IDDM in both medical and social terms. We conclude that not only education of patients and family members, but also education of society as a whole, is needed to improve the quality of life of patients with IDDM, especially in the country with low frequency of IDDM.
Acknowledgements We express our sincere thanks to the Japan Association for Diabetes Care and Education for financial support of this investigation.
References [1] S. Aono, N. Matsuura, S. Amemiya, et al., Social circumstances and life-style of patients with insulin-dependent diabetes aged 18 years or more, J. Jpn. Diabet. Soc. 40 (1997) 547 – 555. [2] M. Matsushima, J. Yokoyama, N. Tajima, Y. Ikeda, T. Agata, Y. Isogai, Social and economic impact on youthonset diabetes in Japan, Diabet. Care 16 (1993) 824–827. [3] N. Robinson, L.K. Stevens, L.E. Protopapa, Education and employment for young people with diabetes, Diabet. Med. 10 (1993) 983 –989.
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[4] T.A. Songer, R.E. LaPorte, J.S. Dorman, T.A. Orchard, D.A. Becker, A.L. Drash, Employment spectrum of IDDM, Diabet. Care 12 (1989) 615 – 622. [5] C.M. Ingberg, M. Palmer, J. Aman, S. Larson, Social consequences of Insulin-dependent diabetes mellitus are limited: a population-based comparison of young adult patients versus healthy controls, Diabet. Med. 13 (1996) 729 – 733. [6] C.E. Lloyd, N. Robinson, J.H. Fuller, Education and employment experiences in young adults with type 1 diabetes mellitus, Diabet. Med. 9 (1992) 661 – 666. [7] The EURODIAB IDDM Complications Study Group, N. Chaturvedi, J.H. Fuller, J.M. Stephenson, The relationship between socioeconomic status and diabetes control and complications in the EURODIAB IDDM Complications Study, Diabet. Care 19 (1996) 423 – 430. [8] T.J. Songer, J.S. Dorman, R.E. LaPorte, D.J. Becker, J.R. Lave, Health insurance and the financial impact of IDDM in families with a child with IDDM, Diabet. Care 20 (1997) 577 – 584. [9] T.J. Songer, K. DeBerry, R.E. LaPorte, J. Tuomilehto, International comparisons of IDDM mortality: clues to prevention and role of diabetes care, Diabet. Care (Suppl. 1) 15 (1992) 15 – 21. [10] C. Gafvels, B. Borjesson, F. Lithner, The social consequences of insulin-treated diabetes mellitus in patients 20 – 50 years of age: an epidemiological case-control study, Scand. J. Soc. Med. 19 (1991) 86 – 93. [11] J. Kokkonen, P. Lautala, P. Salmela, Social maturation in juvenile onset diabetes, Acta Paediatr. 83 (1994) 279 – 284. [12] C.E. Lloyd, N. Robinson, B. Andrews, M.A. Elston, I.H. Fuller, Are the social relationships of young insulin-dependent diabetic patients affected by their condition?, Diabet. Med. 10 (1993) 481 – 485. [13] A.M. Jacobson, R. Dvorak, S.T. Hauser, et al., Psychological adjustment to IDDM: 10-year follow-up of an onset cohort of child and adolescent patients, Diabet. Care 20 (1997) 811 – 818. [14] J.E. Ahlfield, N.G. Soler, S.D. Marrcus, The young adult with diabetes: impact of the disease on marriage and having children, Diabet. Care 8 (1985) 52 – 56.
Marriage rate and number of children among young adults with insulin-dependent diabetes mellitus in Japan Shigeo Aono a,*, Nobuo Matsuura b, Shin Amemiya c, Yutaka Igarashi d, Yasuko Uchigata e, Tatuhiko Urakami f, Kaichi Kida g, Nozomu Sasaki h, Yuko Miki i, Shigeki Miyamoto j a
Department of Pediatrics, Osaka City Uni6ersity Medical School, 1 -4 -3 Asahimachi, Abenoku, Osaka 545 -8585, Japan b Department of Pediatrics, Kitasato Uni6ersity School of Medicine, Kanagawa, Japan c Department of Pediatrics, Yamanashi Medical Uni6ersity, Yamanashi, Japan d Children’s Clinic Igarashi, Miyagi, Japan e Diabetes Center, Tokyo Women’s Medical Uni6ersity School of Medicine, Tokyo, Japan f Department of Pediatrics, Nihon Uni6ersity School of Medicine, Tokyo, Japan g Department of Pediatrics, Ehime Uni6ersity School of Medicine, Ehime, Japan h Department of Pediatrics, Saitama Medical School, Saitama, Japan i Department of Pediatrics, Tokyo Uni6ersity School of Medicine, Tokyo, Japan j Di6ision of Endocrinology, Chiba Children’s Hospital, Chiba, Japan Received 21 June 1999; received in revised form 31 January 2000; accepted 10 February 2000
Abstract The main purpose of our study was to identify the social circumstances and lifestyle of IDDM patients in Japan. The present study focused on the marriage status of both men and women with IDDM as well as the number of children of women with IDDM. A questionnaire was sent to hospitals across the country. Doctors handed it or mailed it to IDDM patients aged 18 years or older. Unsigned answer sheets were returned directly by the patients. Data on the marriage rate and number of children were obtained, and possible factors affecting these indices were assessed. One thousand and thirteen patients (354 men and 659 women) answered the questionnaire. Both men and women with IDDM were less likely to be married in comparison with age-matched Japanese. The number of children of married IDDM women in various age groups was also lower in comparison with the general Japanese female population. Several factors other than diabetes complications including job discrimination, high medical costs, and psychological pressures, were thought to be responsible for these results. © 2000 Elsevier Science Ireland Ltd. All rights reserved. Keywords: IDDM; Marriage rate; Number of children; Epidemiology; Questionnaire survey
* Corresponding author. Tel.: + 81-6-66453816; fax: + 81-6-66368737. E-mail address: [email protected] (S. Aono). 0168-8227/00/$ - see front matter © 2000 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 1 6 8 - 8 2 2 7 ( 0 0 ) 0 0 1 3 7 - 6
S. Aono et al. / Diabetes Research and Clinical Practice 49 (2000) 135–141
136
ing were also analyzed. Analysis was done with an SPSS program (Version 9.01J).
1. Introduction It is important to improve the quality of therapy and education to better the quality of life (QOL) of patients with IDDM, but it is not less important that IDDM patients marry, be employed, and lead an agreeable life as do diabetesfree persons. To make such social conditions a reality it is necessary to acquire a thorough grasp of their problems and find solutions. However, it is difficult to investigate the social and living conditions of IDDM patients at the level of individual medical institutions. To this end large-scale questionnaire surveys will have to be conducted. The present study was carried out with a view to delineating the actual conditions of IDDM patients based on a large-scale questionnaire survey and identify the problems that must be solved to improve their QOL.
3. Results
3.1. Background of patients One thousand and thirteen patients (354 men and 659 women) answered the questionnaire. The mean age of the men was 24.0 9 4.7 years (range 18.1–46.3 years) and that of the women was 24.99 5.3 years (range 18.1–49.6 years). The mean duration of diabetes was 14.295.7 years (range 1.3–29.3 years) for the men and 14.69 6.1 years (range 0.8–37.4 years) for the women. Thirty-four percent of the patients injected insulin once or twice a day and 66% did so three times or more. The percentage of patients on dialysis was 1.1% for men and 1.8% for women.
2. Research design and methods
3.2. Marriage rate
The questionnaire was created by members of Committee for Childhood Diabetes of the Japanese Society for Pediatric Endocrinology. The questionnaire was sent to our member hospitals and related hospitals across the country and was handed or mailed to patients with IDDM aged 18 years or older in 1995. Answer sheets were sent back directly from the patients without a signature. In the current study, we focused on the marriage status and the number of children among 56 questions. Several questions on items which might affect marriage status and childbear-
Both men and women were less likely to be married in comparison with age-matched data for the Japanese population (Table 1). The marriage rate of women with IDDM was significantly lower in all four age groups, including 20–39 years old, and that of men with IDDM was also lower in two age groups, including 25–34 year old. The marriage rate of men with IDDM aged from 30 to 34 years (22.0%) was relatively the lowest, being almost one third of that for the general population (65.2%). On the other hand, there were only two men and seven women who had divorced.
Table 1 Percentage of married IDDM patients in comparison with the general populationa Age group
% Women with IDDM (n)
General population (%)
% Men with IDDM (n)
General population (%)
20–24 25–29 30–34 35–39
6.3** (207) 38.2*** (170) 56.9*** (72) 52.2*** (23)
13.5 57.5 82.7 87.3
6.3 (112) 18.6** (70) 22.0*** (41) 50.0 (6)
6.2 33.0 65.2 78.1
a A nationwide survey done by the Japanese Ministry of Health and Welfare in 1995 is the source of data on the general population. n, number of patients examined. ** x 2 test PB0.01. *** x 2 test PB0.001.
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137
3.3. Number of children
4. Discussion
The number of children of women with IDDM at various ages was also compared with the number for Japanese women (Table 2) using the 1995 nationwide survey by the Japanese Ministry of Health and Welfare. The average number of children born from a women with IDDM was significantly low in three of four age groups, that is, 0.53 in 25–29 age group (P B 0.001, t-test), 0.85 in 30–34 (P B 0.001) and 1.17 in 35 – 39 (P B 0.05), whereas those of general population were 1.09, 1.75 and 2.14, respectively. In general, a greater percentage of IDDM women had no child or only one child. In the 30 – 34 age group, women with IDDM were more likely to have one child (33.3%) compared to that of general population (22.1%). None of the IDDM women had more than three children. The mean age of the first birth was 25 years (n =67); ranging from 17 to 33 years. 3.4. Factors which affect marriage rate
In this study, we found that the marriage rates of men and women with IDDM and the number of children of women with IDDM were both lower than in the general population. Various explanations might be given for these results, including diabetic complications, the quality of patient education, social and economic factors, and the cultural background. Among those factors, we focused on social and psychological aspects in this current study. In our previous study [1], we found that the estimated income of men with IDDM was lower compared to age- and sex-matched siblings. Matsushima et al. [2] reported a similar result from a case-control study in Japan. In our study [1], 36% of men and 41% of women stated that they concealed their disease at their place of employment and 21% of men and 24% of women answered that they had been rejected because they had diabetes. Job discrimination removes equal employment opportunity for patients developing IDDM at an early age. We suspect that this situation may possibly be related to a low annual income and their feeling that medical costs are very heavy. We reviewed several papers dealing with problems in obtaining employment [3–7]. Robinson et al. [3] reported on the employment experiences of young IDDM patients selected from 13 diabetic centers in Great Britain. Young adults with diabetes were significantly more likely to report having lost their jobs than their non-diabetic counterparts, and the diabetic group were more likely to report that they were unable to do the job they wanted. Songer et al. [4] studied the employment status of 158 patients with IDDM in a case control study in the USA. They concluded that there was a tendency for patients to be more likely to be rejected if they gave information on their diabetes at an employment test, but they were equally likely to be employed if their diabetes was concealed. They also reported that diabetic complications are one of the major causes of a lower income. In our study, 6.5% of men and 6.8% of women stated that they were jobless, while in general population the unemployment rate varied from 2
Among the 56 questions in the questionnaire, seven questions which might be related to the lower marriage rate and high rate of childlessness were selected. The answers were separately assessed for men and women in their twenties and thirties (Table 3). Patients who had been refused employment because of or probably because of their diabetes accounted for 35.5% (twenties) and 37.5% (thirties) of men, as well as 34.5 and 39.0% of women (Table 3(a)). Around 90% of the patients found medical expenditures something of a burden and 20% reported major problems(Table 3(b)). The percentage of patients who never suffered unpleasant comments because of their diabetes ranged from 5.7% (women in their twenties) to 19.5% (men in their thirties) (Table 3(c)). Approximately 30% of patients answered that they felt diabetes restricted them from having a relationship with the opposite sex and more than half answered that diabetes restricted school or work attendance (Table 3(d,e)). Almost all of patients worried about their diabetes getting worse and more than half of them felt that they did not always live a sensible life because it is difficult to always take proper care (Table 3(f,g)).
138
Age group (n)
20–24 IDDM (11)
None One Two Three Four or more Total (%)
25–29 General population (282)
54.5 45.5 0 0 0
43.6 44.3 11.7 0.4 0
100.0
100.0
IDDM (64)
54.7*** 37.5 7.8*** 0 0 100.0
30–34 General population (1153)
31.3 35.1 28.0 4.8 0.8 100.0
IDDM (39)
41.0*** 33.3* 25.7* 0* 0 100.0
35–39 General population (1638)
IDDM (12)
General population (1827)
11.6 22.1 47.3 17.2 1.8
25.0 33.3 41.7 0 0
5.1 11.4 51.8 27.7 4.0
100.0
100.0
100.0
a A nationwide survey done by the Japanese Ministry of Health and Welfare in 1995 is the source of data on the general population. n, number of people examined. * x 2 test PB0.05. *** x 2 test PB0.001.
S. Aono et al. / Diabetes Research and Clinical Practice 49 (2000) 135–141
Table 2 Number of children of married women with IDDM in comparison with the general populationa
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Table 3 Some factors that could possibly explain the lower marriage rate and high rate of childlessnessa Questionnaire
Women Twenties
Men Thirties
Twenties
Thirties
Occupational (a) Have you ever been refused employment because of your diabetes? (n) (331) (86) Yes (%) 23.0 25.4 Probably yes (%) 11.5 13.6 No (%) 65.5 61.0
(169) 20.1 15.4 64.5
(48) 27.1 10.4 62.5
Economic (b) Is your expenditure for the treatment of diabetes heavy? (n) (420) Very much (%) 26.4 Painful (%) 41.9 A little (%) 26.0 No (%) 5.7
(228) 20.2 41.6 25.9 12.3
(46) 10.9 26.1 43.5 19.5
(232) 6.5 40.5 41.4 11.6
(47) 4.2 46.8 36.2 12.8
(226) 4.4 18.2 77.4
(47) 8.5 31.9 59.6
(230) 15.7 34.3 50.0
(46) 13.0 37.0 50.0
(235) 26.4 37.5 32.3 3.8
(47) 25.5 51.1 21.3 2.1
(233) 6.9 9.9 50.2 33.0
(47) 4.3 8.5 61.7 25.5
(97) 23.7 35.1 29.9 11.3
Psycho-social (c) I get unpleasant comments because of my diabetes (n) (430) (100) Often (%) 9.5 12.0 Occasionally (%) 48.2 46.0 Seldom (%) 32.8 34.0 Never (%) 9.5 8.0 (d) Does your diabetes restrict your relationship with the opposite sex? (n) (420) (90) Definitely (%) 7.4 12.2 A little (%) 18.1 20.0 No (%) 74.5 67.8 (e) Does your diabetes restrict your school or work attendance? (n) (420) (92) Definitely (%) 18.1 30.4 A little (%) 35.7 31.5 No (%) 46.2 38.1 Diabetes control (f) I am worried about my diabetes getting worse (n) (433) (100) Often (%) 32.3 32.0 Occasionally (%) 37.7 39.0 Seldom (%) 26.1 24.0 Never (%) 3.9 5.0 (g) I do not always live a sensible life because it is difficult to take proper care (n) (433) (100) Totally agree (%) 7.4 6.0 Agree (%) 9.7 8.0 Slightly disagree (%) 52.9 47.0 Totally disagree (%) 30.0 39.0 a
n, number of patients examined.
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to 4% with age. This result indicates that the rate of unemployment in patients with IDDM is slightly high compared to that of general population. Ingberg et al. [5] in Sweden reported that the employment rate was lower in IDDM patients in comparison with age and sex matched healthy persons (71 vs 85%, P B 0.05) and this difference was mainly the consequence of late diabetic complications. They concluded that IDDM affected social life only to a limited extent in the absence of severe vascular complications. From our study and the above mentioned studies, we must conclude that in the younger generation, job discrimination has still some impact upon the opportunity of employment and their income and as they become old, late diabetes complications gradually have a stronger effect on it. This kind of statistics are naturally influenced by the social and economic condition in each country and also reflect the times, therefore it is not right that data should be simply compared between countries. Actually, no international comparative study dealing with this issue was found in medical literature. But it is true that job discrimination, in what degree it may be, affects the motivation of IDDM patients to the good diabetes control. In Japan, all medical costs for the treatment of IDDM are covered by the health insurance system with the aid of public assistance up to the age of 20. After that age, most patients have to pay from 5000 to 15 000 yen monthly depending on their health insurance coverage and details of treatment. But at age 20, a considerably high percentage of IDDM patients are still college students and usually have no job. This may explain why 90% of respondents answered that medical expenditures were at least something of a burden and 20% reported major problems. In most cases, this burden is shouldered by the parents rather than the patients themselves. We are afraid that these economic pressure affect the motivation to maintain good glycemic control [8]. Songer et al. [9] reported that the frequency of medical consultation and self-monitoring of blood glucose decreases in patients with a lower income and/or without medical insurance.
As for the marriage rate, it was reported that the marriage rate of people with diabetes is comparable to that of the general population in USA [4]. On the other hand, Gafvels et al. [10] reported that the rate was lower for people with IDDM in Sweden. In Finland, Kokkonen et al. [11] also reported that diabetics were significantly more often unmarried and living in the same household as their parents compared with the controls. They also indicated that there were difficulties for the diabetic group in separating from their parents and they concluded that having diabetes delays social maturation. The patients showed a more dependent lifestyle and more separation problems. Our results also support the latter findings. Furthermore, in Japan we have to take into consideration the traditional way of thinking, symbolized by the arranged marriage, which still now occurs, although diminishing in percentage. This means that parents and other family members sometimes interfere with marriage. From the psychological point of view, we should pay attention to the findings that 30% answered that diabetes restricted them in relations with the opposite sex and that it restricted school or work attendance in over 50%. Lloyd et al. [12] from their interview of 80 young IDDM people that young adults with IDDM have more negative social experiences which may affect their feelings with regard to having close relationships. It is natural that such long-term psychological pressure may affect the motivation for self-care of diabetes by lowering their self-respect and thus induce poor control [13]. Once they develop diabetic complications, then their quality of life is impaired and this may lower the marriage rate. As for the high rate of childlessness in women with IDDM, it is suspected that it comes from various factors, such as medical and/or economic restrictions, fear of the progression of diabetic complications, and the influence of spouse, parents and physician. Further investigation is necessary to determine which reason is the most important. Ahlfield et al. [14] studied the impact of IDDM on marriage and childbearing in 50 young adults with IDDM. None of their subjects had made a conscious decision to remain unmarried, but 14 out of 50 had decided not to have
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children. These findings clearly suggest that there is an impact of diabetes on marital status, marital life, and childbearing. Physicians and other health professionals need to be aware of these implications of the disease when counseling young diabetics. The fact that the frequency of IDDM in Japan is considerably low compared to other countries may play some role in the rather poor understanding for IDDM in both medical and social terms. We conclude that not only education of patients and family members, but also education of society as a whole, is needed to improve the quality of life of patients with IDDM, especially in the country with low frequency of IDDM.
Acknowledgements We express our sincere thanks to the Japan Association for Diabetes Care and Education for financial support of this investigation.
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