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Correlates of women’s preferences for treatment of heavy menstrual bleeding
Patient Education and Counseling 49 (2003) 125±132
Correlates of women's preferences for treatment of heavy menstrual bleeding Sirkku Vuormaa,*, Juha Teperia, Ritva Hurskainena, Anna-Mari Aaltoa, Pekka Rissanena, Erkki Kujansuub a
STAKES, National Research and Development Centre for Welfare and Health, P.O. Box 220, 00531 Helsinki, Finland b Tampere University Hospital, Tampere, Finland Received 31 August 2001; received in revised form 15 March 2002; accepted 25 March 2002
Abstract This cross-sectional survey investigated factors associated with treatment preferences of women with menorrhagia. Women (n 474) aged 35±54 years referred to gynaecology out-patient clinics for menorrhagia were mailed a self-administered questionnaire before their ®rst clinic visit. The main outcome measure was treatment preference. Hysterectomy and conservative treatment (combined with no treatment) were favoured equally often. In a multivariate analysis, completed family size (P 0:003), menstrual pain (P 0:02), irregular periods (P 0:03), and higher age (P 0:04) predicted hysterectomy preference, as did lower education level (P 0:001), gynaecologist consultations (P 0:002), and unemployment (P 0:03). The psychological factors assessed were not associated with treatment preference. In conclusion, rational considerations regarding stage of reproductive life and severity of symptoms were linked to women's treatment preferences. However, education, employment status and use of specialists' services guided women's preferences even more powerfully than menstrual symptoms and burden caused by them. Doctors should pay more attention to motivating women for a trial of conservative treatment since only half of the women reported previous treatment for their menstrual problem. # 2002 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Patient preference; Psychological factors; Menorrhagia; Hysterectomy; Conservative treatment
1. Introduction There is growing acceptance of the importance of patient involvement in health care. Patients' inputs in health care discussions and decision making include their attitudes, information about treatments, values and preferences [1]. A greater understanding of preferences for mode of treatment is central to current models of shared patient±doctor decision making. It is also of potential importance in enhancing patient adherence to treatment and, in turn, patients' health outcomes [2]. Patients' preferences are usually discussed in the context of quality of care, patient satisfaction, and decision making. Preference can include preferred role in decision making, active or passive, preference for information, or preference for a particular treatment [2±4]. The case for eliciting patients' preferences for treatment is especially strong when patients wish to participate in deci*
Corresponding author. Tel.: 358-9-3967-2434; fax: 358-9-3967-2485. E-mail address: [email protected] (S. Vuorma).
sions on their treatment, where there is insuf®cient evidence from clinical trials about the most effective treatment, and in cases where there is a genuine choice between invasive and less invasive treatments [2,4]. In addition, when quality of life issues are important considerations, people's informed preferences should be as important a factor in decision making as the evidence on procedure's clinical effectiveness and costs [2]. Coulter found, that clinicians' were poor in assessing their menorrhagic patients' preferences, even in those women who had a strong preference for a particular treatment [5]. More generally, preferences differ between patients and health professionals in a range of clinical conditions. However, the direction and magnitude of these differences is not consistent and may vary with clinical condition of interest [6]. Several personal factors, such as age, educational status, and type of clinical problem have been found to in¯uence on patients' desires for involving in decision making. Younger patients and those with less severe disease are more likely to prefer active role in decisions about their care [3,4,7±9]. Patient's desire for an active role in treatment choices is
0738-3991/02/$ ± see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 2 ) 0 0 0 6 9 - 1
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likely to be increasing in all social groups, because knowledge of the risks as well as bene®ts of medical care is growing, and because willingness to accept the clinicians' authority is decreasing [4]. To the best of our knowledge, less is known, in general, of preferences for a particular treatment mode. In addition, a less often addressed issue is patients' preference for treatments with different consequences, for instance for reproduction. Heavy menstrual bleeding, menorrhagia, is a common non-life-threatening condition which impairs the quality of life [10]. Consultation rates have been rising, suggesting either an increased incidence or decreased tolerance of this problem [11]. Referral and treatment rates vary nationally and internationally [11,12], re¯ecting uncertainty about the most appropriate management [13]. In the absence of a reliable and feasible diagnostic method the diagnosis of menorrhagia relies mainly on the woman's own experience of the amount of bleeding and inconvenience caused by it. The expanding range of treatment options for menorrhagia includes pharmaceutical treatments, a hormonal intrauterine system, minimal access surgery and hysterectomy [14]. These, however, vary in terms of effectiveness, risks, costs and implications for reproduction. Therefore, women's own involvement, their perceptions of treatment alternatives, and values and preferences, are particularly important when management decisions for heavy menstrual bleeding are made. Few studies have investigated women's preferences regarding the treatment of menstrual problems, including heavy menstruation [5,15,16]. Treatment preferences have been evaluated in various ways. The study of Sculpher et al. [15] dealt with surgical treatment options for heavy menstruation and how women assessed the attributes of hysterectomy and minimal access surgery. These treatment alternatives were equally favoured. In the study of Coulter et al. [5], women consulted a general practitioner due to heavy menstruation. Treatment preference was evaluated on the basis of the most favoured treatment option (if any). Warner's study [16] involved patients in a gynaecology outpatient clinic suffering from several gynaecological symptoms. Only 35 of them had heavy menstruation alone, while 59 suffered from combinations of premenstrual symptoms, menstrual pain and heavy menstruation. In these two studies, higher age, parity, dissatisfaction with a birth control method [16], severity of symptoms and lower education [5] were associated with preferring hysterectomy. One study among women undergoing hysterectomy [17] found an association between prior sterilisation and this operation. Some studies have examined perceptions of menorrhagia in the context of psychological morbidity. Women who were seeking care for bleeding problems reported more psychological problems compared to other female populations [18,19]. Also, women referred to hysterectomy reported high levels of anxiety and depression [20±23]. In a recent study, seeking care for heavy menstruation, regardless of the measured normal amount of menstrual ¯ow, was related to
certain psychological and social factors [24]. However, detailed investigations of how psychological factors are related to women's treatment preference have not been performed. Moreover, women's own perceptions of the causes, duration and curability of the complaint may in¯uence their treatment seeking behaviour [25] and thus also their treatment preferences. In sum, factors associated with treatment preferences for bleeding problems have so far been studied mainly in terms of sociodemographic and clinical factors, and in heterogeneous samples of women with diverse gynaecological complaints. The present study addresses the treatment preferences of women for whom heavy menstrual bleeding was the main cause for seeking gynaecological care. In addition to previously studied correlates, such as sociodemographic factors, the stage of woman's reproductive life and severity of menstrual symptoms, we also addressed psychological well-being, knowledge of the nature of menorrhagia, and personal patterns of health service use for the treatment of heavy menstruation and other health problems. 2. Methods 2.1. Sample The study took place in 10 central and local hospitals, together serving almost half of the Finnish population of 5 million people. Participants were selected in two phases in order to ensure that all the women had excessive menstrual bleeding as the main presenting health problem. First, gynaecologists at the gynaecology out-patient clinics selected women according to referral documents of patients referred between November 1995 and October 1998. Those meeting the inclusion criteria (age 35±54 years, cause of referral heavy menstrual bleeding or ®broids, no clinical ®ndings suggesting operative treatment, n 1423) were sent an invitation to participate along with a questionnaire together with the appointment information. Women were asked to mail the questionnaire before their visit to the clinic. In all, 867 (61%) women returned the questionnaire, and 729 (84%) of these were willing to participate in the study. The ®nal decision on inclusion was made on the basis of the questionnaire information. Two hundred and nineteen women were excluded because they either did not assess their menstruation as heavy or something else was reported as the primary cause for seeking gynaecological help. Thirtyone responses were rejected because of hormone replacement therapy. The ®nal study group comprised 474 women. The non-eligible women, of whom 94% had pelvic pain or pressure as the primary reason for seeking care, were older (45.9 years versus 44.4 years, P 0:001) than the eligible ones, but the two groups did not differ in terms of education or employment status.
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Fig. 1. Definition of a treatment preference.
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This study was approved by the ethical committees of STAKES and the participating hospitals. Women were informed that participation or non-participation would not in¯uence their treatment. All women signed an informed consent form. 2.2. Instruments Measurement of the women's preference for various treatments was based on three aspects: their perceived impact on menstruation, fertility, and the type of treatment. The preference questions were those of Warner [16] supplemented by two items. First, we asked if respondents were willing to have treatment for their menstrual problem, assuming it would not pose health risks (Fig. 1, step 1). Secondly, in an open-ended question, we asked them to name the method they would favour if all methods were suitable for them (Fig. 1, step 2). Next, using Warner's instrument, we asked for their aspira-
tions regarding three aspects of the treatment: (1) effect on periods; (2) contraceptive effect; (3) type of treatment (including major operation, i.e. hysterectomy, smaller surgical procedure such as ablation of endometrial lining or resection of single myomas, pharmacological treatment). The women were also asked to rank these three aspects of treatment in importance. We produced preference categories of hysterectomy, conservative treatment, and no-treatment. If the desired method and the important aspects of treatment were incompatible, the preference was classi®ed as unclear. Factors associated with the stage of reproductive life were age, desire for more children (yes/no), current birth control method, and satisfaction with it. Information on the severity of menstrual symptoms included the number of days of excessive bleeding and passing clots, and duration of the problem bleeding history. The amount of bleeding was measured with the four-point Likert-scale (light, normal, heavy, very heavy; excluded if not heavy or very heavy).
Table 1 Characteristics of women with heavy menstrual bleeding by pre-treatment preference (n 474) Characteristics
Pre-treatment preference Hysterectomy (n 185)
Conservative (n 113)
No treatment (n 69)
Unclear (n 107)
Stage of reproductive life Age (years) Wish for further pregnancies (yes or possibly, %) Sterilised (%) Satisfied with birth control method (%)a
44.9 (0.31) 0 44 77
43.8 (0.40)* 11*** 41 81
44.3 (0.51) 10*** 35* 78
44.1 (0.41) 3* 45 85
Severity and inconvenience of menstrual symptoms Inconvenience due to heavy bleeding Menstrual pain Number of days passing clots Perceiving periods very heavy (%) Number of days of heavy bleeding Regular periods (%) Pelvic pain or pressure (%) Duration of bleeding problems (years)
20 (0.33) 5.3 (0.26) 3.4 (0.14) 66 4.0 (0.17) 66 49 7.7 (0.8)
19 (0.41) 3.7 (0.34)*** 2.9 (0.18)* 61 3.9 (0.21) 80* 34* 8.6 (1.0)
17 (0.55)*** 3.6 (0.43)*** 2.5 (0.22)*** 42*** 3.9 (0.27) 62 41 7.7 (1.4)
20 (0.43) 5.2 (0.35) 2.9 (0.18)* 54* 3.7 (0.22) 66 46 9.1 (1.1)
Knowledge about menorrhagia Knowing not all the causes always have to be treated (%)
56
65
58
58
Sociodemographic factors Education less than 12 years (%) Unemployed (%)
62 11
39*** 5
57 16
64 10
Psychological factors Anxiety Emotional well-being Psychosomatic symptoms
36.2 (0.82) 67.7 (1.47) 33.8 (0.58)
37.2 (1.05) 67.0 (1.86) 32.1 (0.78)
35.5 (1.39) 70.0 (2.38) 30.8 (0.98)**
36.3 (1.11) 67.1 (1.92) 32.1 (0.78)
50
50
33*
48
Use of health services Previous or current treatment for heavy bleeding (%) Number of visits to A gynaecologist due to heavy bleeding Any other physician due to heavy bleeding Any physician due to other causes than heavy bleeding
0.8 (0.06) 1.10 (0.11) 3.26 (0.32)
0.59 (0.08)* 1.18 (0.13) 3.68 (0.41)
Values are means (S.E.), unless stated otherwise. a Only women needing contraception. * P < 0:05 by w2- or t-test comparing preference groups, hysterectomy preference as reference group. ** P < 0:01 by w2- or t-test comparing preference groups, hysterectomy preference as reference group. *** P < 0:001 by w2- or t-test comparing preference groups, hysterectomy preference as reference group.
0.37 (0.10)*** 0.64 (0.17)* 4.43 (0.52)
0.44 (0.08)*** 1.00 (0.14) 4.50 (0.41)*
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Menstrual pain was assessed on a scale ranging from 0 (for no pain) to 6 (for heaviest possible pain), and was multiplied by the frequency of pain (0 for never, to 2 for every period), to yield a combined score of 0±12 [24]. Perceived inconvenience due to bleeding was measured by ®ve items (effects on work performance, physical exercise, leisure, hygiene, sexual functioning) with a ®ve-point response scale (theoretical range of sum score 5±25) [24]. The existence of pelvic pain or pressure was asked by a single item (yes/no). There was one question on regularity of the cycle. Cycles with less than 10 days variation were de®ned as regular. An indirect method was used to assess women's perception of whether heavy menstruation should always be treated. First, in an open-ended question they were asked to list all the causes of heavy menstruation they knew, and secondly those causes that always need to be treated. If any of the causes given in the ®rst list was not mentioned in the second, the respondent was judged to know that not all causes always have to be treated. The sociodemographic factors recorded were level of education and employment status. The psychological factors measured were emotional well-being, anxiety, and psychosomatic symptoms. The ®rst one was measured by the ®veitem emotional well-being subscale of the RAND 36-item Health Survey [26,27], which contains the same questions as the MOS SF-36 [28], scale 0±100. Anxiety was measured by the Finnish version of Spielberg's 20-item state anxiety scale, ranging from 20 to 80 [29,30]. The frequency of psychosomatic symptoms was measured by an 18-item questionnaire previously used in the METELI study [31], scale 18±72. Higher scores in these three instruments indi-
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cated better emotional well-being, higher level of anxiety, and more frequent psychosomatic symptoms, respectively. The questions on the use of health services dealt with previous and current treatments of heavy bleeding and number of visits to a physician (general practitioner, private gynaecologist, other private physician, visits to out-patient clinics) during the past 12 months, either for the bleeding problem or any other reason. 2.3. Statistical analysis Univariate associations were analysed by Pearson's correlations and group differences in means and proportions. Statistical signi®cance was tested by the w2-test, Fischer's exact test and t-tests. A logistic regression model was used to examine which factors were the strongest correlates of preference for hysterectomy as opposed to conservative measures. However, to avoid multicollinearity in the model, only two of gynaecological symptom variables, menstrual pain and irregular periods, were included. Of the seven gynaecological symptom variables these two showed the strongest association with the dependent variable in the preliminary analysis. After this, all other explanatory variables were entered simultaneously into the logistic model. 3. Results In this study sample, 39% of the women preferred hysterectomy and 24% conservative treatment for their bleeding
Table 2 Logistic regression for hysterectomy vs. conservative treatment preference among women with heavy menstrual bleeding
Age (years) Wish for further pregnancies (1 yes, perhaps, 0 no) Sterilised (1yes, 0no) Satisfied with birth control method (1yes, 0other) Menstrual paina Irregular periods (1 yes, 0 no) Inconvenience due to heavy menstruationb Knowing not all the causes always have to be treated (1 yes, 0 no) Education less than 12 years (1 yes, 0 no) Unemployment (1 yes, 0 no) Anxietyc Emotional well-being (RAND 36)d Psychosomatic symptomse Previous or current treatment of heavy menstruation (1 yes, 0 no) Number of visits to a gynaecologist due to heavy bleeding Number of visits to any physician
OR
95% CI
P
1.11 0.23 1.40 0.72 1.11 2.06 1.17 0.88 2.61 3.59 0.59 1.00 1.30 1.12 1.73 0.96
1.00±1.16 0.09±0.60 0.71±2.75 0.36±1.45 1.02±1.21 1.07±3.96 0.81±1.69 0.50±1.56 1.47±4.62 1.10±11.7 0.25±1.38 0.96±1.01 0.53±3.18 0.64±1.97 1.21±2.47 0.89±1.04
0.04 0.0025 ± ± 0.023 0.030 ± ± 0.001 0.034 ± ± ± ± 0.0024 ±
OR; odd ratios for preferring hysterectomy. Effective sample size is 275 women. Sixteen respondents were excluded from the analysis because of missing data for variables included in the model. Most of the missing data were in questions concerning the use of health services (n 13). The model predicted correct preferences in 74% of the observed cases. a Scale ranging from 0 to 12, higher score indicates more pain. b Scale ranging from 5 to 25, higher score indicates more inconvenience. c Scale ranging from 20 to 80, higher score indicates higher level of anxiety. d Scale ranging from 0 to 100, higher score indicates better emotional well-being. e Scale ranging from 18 to 72, higher score indicates more frequent symptoms.
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problem. Fifteen percent did not necessarily want any treatment. For 23% of the women, treatment preference could not be de®ned unambiguously, because the desired method and important aspects of treatment were incompatible. The characteristics of the women according to treatment preference are given in Table 1. Those preferring hysterectomy had more days of passing clots when bleeding and more frequent visits to a private gynaecologist than other women. None preferring hysterectomy desired more children. Women preferring conservative treatment were younger, better educated, and had more regular periods and less menstrual and pelvic pain or pressure than women preferring hysterectomy (Table 1). Those preferring no treatment perceived several aspects of their menstrual symptoms as milder, and also had less psychosomatic symptoms than those preferring hysterectomy. They also had a lower sterilisation rate, fewer previous treatments for menorrhagia and fewer visits to doctors other than gynaecologists due to heavy menstruation (Table 1). The four preference groups did not differ in terms of number of heavy bleeding days, duration of bleeding problem, rate of unemployment, levels of anxiety and emotional well-being, nor satisfaction with current birth control method. Women in all preference groups were equally likely to understand that not all causes of heavy menstruation always need treatment. The multivariate logistic regression model showed that completed family size, menstrual pain, irregular periods, and higher age, but also lower education level, more frequent consultations with a private gynaecologist, and unemployment all independently predicted preferring hysterectomy (Table 2). The model predicted correct preference in 74% of the observed cases. 4. Discussion Patients' involvement and eliciting their preferences are regarded as important in health care. In this cross-sectional study, we examined the correlates of treatment preferences of women seeking medical care for heavy menstrual bleeding in terms of reproductive, sociodemographic and psychological factors, gynaecological symptoms and use of health services. Hysterectomy and conservative treatments (including preference for no treatment) were equally favoured. However, for one-fourth of the women, the preference remained unclear because of con¯icting expectations/objectives for treatment. Completed family size, more severe menstruation-related symptoms, and higher age were associated with favouring hysterectomy over conservative treatment. Lower education and unemployment seemed to increase women's willingness for hysterectomy. In addition, more frequent visits to private gynaecologists, but not use of other health services, predicted hysterectomy preference. However, psychological factors or knowing it is not always necessary to treat heavy menstruation did not distinguish treatment preferences.
The strengths of the study were that the two-phase selection procedure enabled us to address women whose primary complaint was heavy menstrual bleeding. We also used a set of standardised validated instruments for psychological well-being [26,27,29,30]. Menstrual symptoms were asked about with the same questions commonly used in clinical practice and in a resent menorrhagia study [24]. There is no standardised instrument for measuring menorrhagic women's treatment preference. Our measurement approach considers the types of treatment in terms of their main perceived aspects and consequences, including their effect on menstruation and reproduction, but also the woman's willingness to have treatment for her complaint. There are some limitations to be considered when evaluating these results. The sample comprised patients in gynaecology out-patient clinics, who are more likely to prefer surgery and to have more symptoms than those not referred [5]. The response rate of 51% (without a reminder) can be considered rather typical. In population based surveys in Finland, the initial response rate (before a reminder) is typically round 50% [27,32]. We could not mail any reminder due to the limited time interval before women were to enter the clinic. Our results associating completed family size, more severe symptoms, higher age and lower education level with treatment preference for hysterectomy accord with previous ®ndings [5,16]. Unlike in some earlier studies, neither sterilisation [17] nor satisfaction with current birth control method [16] was associated with treatment preference. This is understandable, since in Finland the vast majority of women aged 35 years or more use effective contraception, and over 90% of them are satis®ed with the method they use [32]. In this study, as well as in the one of Sculpher et al. [15] very similar proportions of women favoured hysterectomy and uterus saving treatment(s). This con®rms the ®nding that women have quite different attitudes to various treatment alternatives [15]. In earlier studies, women scheduled for hysterectomy reportedly have higher levels of depression and anxiety than other women [20,22]. Among our study population the level of emotional well-being was lower than that of healthy women of the same age [27], perhaps because of the burden of heavy menstruation. The level of anxiety was about the same as that of healthy women [33]. However, psychological factors did not distinguish treatment preferences, except that women not wanting any treatment experienced psychosomatic symptoms (as well as menstrual symptoms) less frequently than other women. Therefore, our results do not support the interpretation suggested by previous literature [20±23] that desire for hysterectomy is linked to psychological problems. Having a previous gynaecology consultation(s) was an important determinant of hysterectomy preference in this study. In Finland, in addition to municipality-run health care services, a marked proportion of specialised out-patient services are provided by the private sector. Hospital specialists working as part-time private practitioners offer a direct
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pathway to public hospitals. Private care is especially common in the ®eld of gynaecology [34], and women using these services are likely to be better educated and living in urban areas compared to women using public services [34]. Multivariate model indicates that the association of hysterectomy preference with visits to a gynaecologist was not due to more severe symptoms. Instead, specialist consultations showed an independent relationship with women's willingness for hysterectomy even when menstrual symptoms were controlled. It is possible that specialists increase the demand for hysterectomy, but in this cross-sectional study it was not possible to analyse any causal pathways. Discussion with a gynaecologist may increase acceptance of operative treatment. It is also possible that women wanting hysterectomy consult specialists for re-assurance and re-enforcement. Clearly, more research is needed on the communication between women seeking care for menorrhagia and their physicians. Unemployed and less educated women were more likely to prefer hysterectomy than others. In Finland, there are no obvious economic incentives affecting preferences. Although the total costs of hysterectomy (at least in the short-term) are higher than those of other effective treatments [35], the out-ofpocket costs are practically the same. However, operative treatment followed by a 2±5 weeks sick leave can have different sequelae for women, depending on their work. Because better educated women are more likely to occupy higher positions and have more responsibilities, they may be less willing to accept a longish sick leave. Alternatively, our ®ndings may re¯ect diffusion of new (medical) technologies seen also among users of hormone replacement therapy [36]. The proportions opting for different treatment preferences cannot be generalised to all women with heavy menstruation, and would obviously be different among patients in primary care. There is no reliable objective method for measuring the amount of menstrual blood loss in clinical use. On the other hand, several studies have shown that the measured blood loss does not correlate very well with women's own assessment of her menstrual bleeding [24,37±40]. This might be due to the fact that blood comprises a varying proportion of total menstrual ¯uid [41]. The estimate of actual blood would be more accurate, if the total ¯uid volume is measured [42]. Visual assessments of menstrual blood loss using pictorial charts have also been developed but the results of their reliability have been con¯icting [43±46]. 5. Practice implications A woman's perception of her menstrual complaint is the basis of the need and search for medical help. Treatment decisions are mainly based on subjective evaluations and the doctor's interpretation of the patient's complaints. Not only severity of menstrual symptoms and reproductive factors guide women's treatment preferences [5,16]. As our study shows, several non-medical factorsÐeducation, employment
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status and use of gynaecology servicesÐalso in¯uence treatment preference and even more powerfully than menstrual symptoms and burden caused by them. Heavy menstrual bleeding is a true health problem and patients' complaint of it needs to be taken seriously. Not only excessive menstrual ¯ow but also other symptoms related to menstruation need to be considered when choosing treatment. Health professionals should pay more attention in motivating women for a trial of conservative treatment since only half of the women reported previous treatment for their menstrual problem. Acknowledgements The authors are grateful to the women who gave of their time to take part in the survey. We also thank the staff of the gynaecologic clinics in HyvinkaÈaÈ Hospital, Jorvi Hospital, Kanta-HaÈme Central Hospital, Keski-Suomi Central Hospital, Kymenlaakso Central Hospital, KaÈtiloÈopisto Hospital, Lohja Hospital, Peijas Hospital, Pohjois-Karjala Central Hospital, and SeinaÈjoki Hospital. This study was supported by STAKES (National Research and Development Centre for Welfare and Health) and Doctoral Programmes in Public Health at Helsinki and Tampere Universities. References [1] Buetow S. The scope for the involvement of patients in their consultations with health professionals: rights, responsibilities and preferences of patients. J Med Ethics 1998;24:243±7. [2] Bowling A, Ebrahim S. Measuring patients' preferences for treatment and perceptions of risk. Qual Health Care 2001;10(Suppl 1):i2±8. [3] Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Int Med 1980;92:832±6. [4] Coulter A. Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy 1997;2:112±21. [5] Coulter A, Peto V, Doll H. Patients' preferences and general practitioners' decisions in the treatment of menstrual disorders. Fam Pract 1994;11:67±74. [6] Montgomery AA, Fahey T. How do patients' treatment preferences compare with those of clinicians? Qual Health Care 2001;10(Suppl 1):i39±43. [7] Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA 1984;252:2990±4. [8] Coulter A, Fitzpatrick R. The patient's perspective regarding appropriate health care. In: Albrecht GL, Fitzpatrick R, Scrimshaw SC, editors. Handbook of Social Studies in Health and Medicine. Trowbridge: SAGE Publications, 2000. p. 454±64. [9] Robinson A, Thomson R. Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care 2001;10(Suppl 1):i34±38. [10] Coulter A, Peto V, Jenkinson C. Quality of life and patient satisfaction following treatment for menorrhagia. Fam Pract 1994;11:394±401. [11] Coulter A, McPherson K, Vessey M. Do British women undergo too many or too few hysterectomies? Soc Sci Med 1988;27:987±94. [12] Coulter A, Klassen A, MacKenzie IZ, McPherson K. Diagnostic dilatation and curettage: is it used approprately? Br Med J 1993; 306:236±9. [13] Coulter A, Long A, Kelland J, O'Meara S, Sculpher M, Song F, Scheldon TA. Managing menorrhagia. Qual Health Care 1995;4:218±26.
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[14] Kelleher C, Braude P. Recent advances: gynaecology. Br Med J 1999;319:689±92. [15] Sculpher MJ, Dwyer N, Browning J, Horsley S, Cullimore J. A survey of women's preferences regarding alternative surgical treatments for menorrhagia. Health Expect 1998;1:96±105. [16] Warner P. Preferences regarding treatments for period problems: relationship to menstrual and demographic factors. J Psychosom Obstet Gynaecol 1994;15:93±110. [17] Hillis SD, Marchbanks PA, Peterson HB. Clinical and pathologic characteristics of women undergoing hysterectomy after tubal sterilization. Obstet Gynecol 1996;88:246±50. [18] Ballinger CB. Psychiatric morbidity and the menopause: survey of a gynaecological out-patient clinic. Br J Psychiatry 1977;131:83±9. [19] Greenberg M. The meaning of menorrhagia: an investigation into the association between the complaint of menorrhagia and depression. J Psychosom Res 1983;27:209±14. [20] Gath D, Cooper P, Day A. Hysterectomy and psychiatric disorder. Part I. Levels of psychiatric morbidity before and after hysterectomy. Br J Psychiatry 1982;140:335±50. [21] Wijma K, Kauer FM, Janssens J. Indications for prevalence and implications of hysterectomy: a discussion. J Psychosom Obstet Gynaecol 1984;3:69±77. [22] Ryan MM, Dennerstein L, Pepperell R. Psychological aspects of hysterectomy: a prospective study. Br J Psychiatry 1989;154:516±22. [23] Thornton EW, McQueen C, Rosser R, Kneale T, Dixon K. A prospective study of changes in negative mood states of women undergoing surgical hysterectomy: the relationship to cognitive predisposition and familial support. J Psychosom Obstet Gynaecol 1997;18:22±30. [24] Hurskainen R, Aalto A-M, Teperi J, Grenman S, KivelaÈ A, Kujansuu E, et al. Psychosocial and other characteristics of women complaining of with and without actual increased menstrual blood loss. Br J Obstet Gynecol 2001;108:281±5. [25] Leventahl H, Nerenz DR, Steele DJ. Illness representations and coping with health threats. In: Baum A, Taylor SE, Singer JE, editors. Handbook of Psychology and Health. Hillsdale: Lawrence Erlbaum Associates Publisher, 1984. p. 219±52. [26] Hays RD, Sherbourne CD, Mazel RM. The RAND 36-item Health Survey 1.0. Health Econ 1993;2:217±27. [27] Aalto A-M, Aro AR, Teperi J. RAND 36 terveyteen liittyvaÈn elaÈmaÈnlaadun mittarina [in Finnish: RAND 36 as a Measure of Health-Related Quality of Life]. SaarijaÈrvi: STAKES, 1999. [28] Ware Jr. JE, Sherbourne CD. The MOS 36-item short-form Health Survey (SF-36). Part I. Conceptual framework and item selection. Med Care 1992;30:473±83. [29] Spielberger CD, Gorsuch RL, Lushene RE. Manual for the State-Trait Anxiety Inventory. Palo Alto: Consulting Psychologists Press, 1970. [30] Poikolainen K, Aalto-SetaÈlaÈ T, PitkaÈnen T, Tuulio-Hendriksson A-M, LoÈnnqvist J. The mental symptoms with related factors of young adults [Nuorten aikuisten psyykkiset oireet ja niihin liittyvaÈt tekijaÈt]. Kansanterveyslaitoksen tutkimuksia KTL, 1997. p. A2.
[31] METELI. Occupational status, working environment, and morbidity among employees of metal industry factories [in Finnish: Ammattiasema, tyoÈolot ja sairastavuus metalliteollisuuden henkiloÈstoÈryhmissaÈ]. JyvaÈskylaÈ, 1977. [32] Sihvo S, Hemminki E, Koponen P, Kosunen E, Malin-Silverio M, PeraÈlaÈ M-L, RaÈikkoÈnen, O. Contraception and use of health services. [in Finnish: Raskauden ehkaÈisy ja terveyspalvelujen kaÈyttoÈ. Tuloksia vaÈestoÈpohjaisesta tutkimuksesta 1994]. Themes. Helsinki: STAKES, 1995. Report no. 27. [33] Aro AR. Psychosocial predictors of first attendance for organised mammography screening [in Finnish: Mammografiaseulontaan osallistumista selittaÈvaÈt psykososiaaliset tekijaÈt]. Helsinki: National Health Institute, 1996. [34] Hemminki E, Sihvo S, Forssas E, Koponen P, Kosunen E, PeraÈlaÈ ML. The role of gynaecologist in women's health care: women's view. Int J Qual Health Care 1998;10:59±64. [35] Hurskainen R, Teperi J, Rissanen P, Aalto A-M, Grenman S, KivelaÈ A, et al. Quality of life and cost-effectiveness of levonorgestrelreleasing intrauterine system versus hysterectomy for treatment of menorrhagia: a randomised trial. Lancet 2001;357:273±7. [36] Topo P, Klaukka T, Hemminki E, Uutela A. Use of hormone replacement therapy in 1976±89 by 45±64 year old Finnish women. J Epidemiol Commun Health 1991;45:277±80. [37] Hallberg L, HoÈgdahl A, Nilsson L, Rybo G. Menstrual blood loss: a population study. Acta Obstet Gynecol Scand 1966;45:320±51. [38] Chimbira TH, Anderson ABM, Turnbull AC. Relation between measured menstrual blood loss and patient's subjective assessment of loss, duration of bleeding, number of sanitary towels used, uterine weight and endometrial surface area. Br J Obstet Gynecol 1980; 87:603±9. [39] Fraser IS, McCarron G, Markham R. A preliminary study of factors influencing perceptations of menstrual blood loss volume. Am J Obstet Gynecol 1984;149:788±93. [40] Higham JM, Shaw RW. Clinical associations with objective menstrual blood volume. Eur J Obstet Gynecol Reprod Biol 1999; 82:73±6. [41] Fraser IS, McCarron G, Markham R, Resta T. Blood and total fluid content of menstrual discharge. Obstet Gynecol 1985;65:194±8. [42] Fraser IS, Warner P, Marantos PA. Estimating menstrual blood loss in women with normal and excessive menstrual fluid volume. Obstet Gynecol 2001;98:806±14. [43] Higham JM, O'Brien PMS, Shaw RW. Assessment of menstrual blood loss using a pictorial chart. Br J Obstet Gynecol 1990;97:734±9. [44] Janssen CA, Scholten PC, Heintz AP. A simple visual assessment technique to discriminate between menorrhagia and normal menstrual blood loss. Obstet Gynecol 1995;85:977±82. [45] Reid PC, Coker A, Coltart R. Assessment of menstrual blood loss using a pictorial chart: a validation study. Br J Obstet Gynecol 2000; 107:320±2. [46] Wyatt KM, Dimmock PW, Walker TJ, O'Brien PM. Determination of total menstrual blood loss. Fertil Steril 2001;76:125±31.
Correlates of women's preferences for treatment of heavy menstrual bleeding Sirkku Vuormaa,*, Juha Teperia, Ritva Hurskainena, Anna-Mari Aaltoa, Pekka Rissanena, Erkki Kujansuub a
STAKES, National Research and Development Centre for Welfare and Health, P.O. Box 220, 00531 Helsinki, Finland b Tampere University Hospital, Tampere, Finland Received 31 August 2001; received in revised form 15 March 2002; accepted 25 March 2002
Abstract This cross-sectional survey investigated factors associated with treatment preferences of women with menorrhagia. Women (n 474) aged 35±54 years referred to gynaecology out-patient clinics for menorrhagia were mailed a self-administered questionnaire before their ®rst clinic visit. The main outcome measure was treatment preference. Hysterectomy and conservative treatment (combined with no treatment) were favoured equally often. In a multivariate analysis, completed family size (P 0:003), menstrual pain (P 0:02), irregular periods (P 0:03), and higher age (P 0:04) predicted hysterectomy preference, as did lower education level (P 0:001), gynaecologist consultations (P 0:002), and unemployment (P 0:03). The psychological factors assessed were not associated with treatment preference. In conclusion, rational considerations regarding stage of reproductive life and severity of symptoms were linked to women's treatment preferences. However, education, employment status and use of specialists' services guided women's preferences even more powerfully than menstrual symptoms and burden caused by them. Doctors should pay more attention to motivating women for a trial of conservative treatment since only half of the women reported previous treatment for their menstrual problem. # 2002 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Patient preference; Psychological factors; Menorrhagia; Hysterectomy; Conservative treatment
1. Introduction There is growing acceptance of the importance of patient involvement in health care. Patients' inputs in health care discussions and decision making include their attitudes, information about treatments, values and preferences [1]. A greater understanding of preferences for mode of treatment is central to current models of shared patient±doctor decision making. It is also of potential importance in enhancing patient adherence to treatment and, in turn, patients' health outcomes [2]. Patients' preferences are usually discussed in the context of quality of care, patient satisfaction, and decision making. Preference can include preferred role in decision making, active or passive, preference for information, or preference for a particular treatment [2±4]. The case for eliciting patients' preferences for treatment is especially strong when patients wish to participate in deci*
Corresponding author. Tel.: 358-9-3967-2434; fax: 358-9-3967-2485. E-mail address: [email protected] (S. Vuorma).
sions on their treatment, where there is insuf®cient evidence from clinical trials about the most effective treatment, and in cases where there is a genuine choice between invasive and less invasive treatments [2,4]. In addition, when quality of life issues are important considerations, people's informed preferences should be as important a factor in decision making as the evidence on procedure's clinical effectiveness and costs [2]. Coulter found, that clinicians' were poor in assessing their menorrhagic patients' preferences, even in those women who had a strong preference for a particular treatment [5]. More generally, preferences differ between patients and health professionals in a range of clinical conditions. However, the direction and magnitude of these differences is not consistent and may vary with clinical condition of interest [6]. Several personal factors, such as age, educational status, and type of clinical problem have been found to in¯uence on patients' desires for involving in decision making. Younger patients and those with less severe disease are more likely to prefer active role in decisions about their care [3,4,7±9]. Patient's desire for an active role in treatment choices is
0738-3991/02/$ ± see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 2 ) 0 0 0 6 9 - 1
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likely to be increasing in all social groups, because knowledge of the risks as well as bene®ts of medical care is growing, and because willingness to accept the clinicians' authority is decreasing [4]. To the best of our knowledge, less is known, in general, of preferences for a particular treatment mode. In addition, a less often addressed issue is patients' preference for treatments with different consequences, for instance for reproduction. Heavy menstrual bleeding, menorrhagia, is a common non-life-threatening condition which impairs the quality of life [10]. Consultation rates have been rising, suggesting either an increased incidence or decreased tolerance of this problem [11]. Referral and treatment rates vary nationally and internationally [11,12], re¯ecting uncertainty about the most appropriate management [13]. In the absence of a reliable and feasible diagnostic method the diagnosis of menorrhagia relies mainly on the woman's own experience of the amount of bleeding and inconvenience caused by it. The expanding range of treatment options for menorrhagia includes pharmaceutical treatments, a hormonal intrauterine system, minimal access surgery and hysterectomy [14]. These, however, vary in terms of effectiveness, risks, costs and implications for reproduction. Therefore, women's own involvement, their perceptions of treatment alternatives, and values and preferences, are particularly important when management decisions for heavy menstrual bleeding are made. Few studies have investigated women's preferences regarding the treatment of menstrual problems, including heavy menstruation [5,15,16]. Treatment preferences have been evaluated in various ways. The study of Sculpher et al. [15] dealt with surgical treatment options for heavy menstruation and how women assessed the attributes of hysterectomy and minimal access surgery. These treatment alternatives were equally favoured. In the study of Coulter et al. [5], women consulted a general practitioner due to heavy menstruation. Treatment preference was evaluated on the basis of the most favoured treatment option (if any). Warner's study [16] involved patients in a gynaecology outpatient clinic suffering from several gynaecological symptoms. Only 35 of them had heavy menstruation alone, while 59 suffered from combinations of premenstrual symptoms, menstrual pain and heavy menstruation. In these two studies, higher age, parity, dissatisfaction with a birth control method [16], severity of symptoms and lower education [5] were associated with preferring hysterectomy. One study among women undergoing hysterectomy [17] found an association between prior sterilisation and this operation. Some studies have examined perceptions of menorrhagia in the context of psychological morbidity. Women who were seeking care for bleeding problems reported more psychological problems compared to other female populations [18,19]. Also, women referred to hysterectomy reported high levels of anxiety and depression [20±23]. In a recent study, seeking care for heavy menstruation, regardless of the measured normal amount of menstrual ¯ow, was related to
certain psychological and social factors [24]. However, detailed investigations of how psychological factors are related to women's treatment preference have not been performed. Moreover, women's own perceptions of the causes, duration and curability of the complaint may in¯uence their treatment seeking behaviour [25] and thus also their treatment preferences. In sum, factors associated with treatment preferences for bleeding problems have so far been studied mainly in terms of sociodemographic and clinical factors, and in heterogeneous samples of women with diverse gynaecological complaints. The present study addresses the treatment preferences of women for whom heavy menstrual bleeding was the main cause for seeking gynaecological care. In addition to previously studied correlates, such as sociodemographic factors, the stage of woman's reproductive life and severity of menstrual symptoms, we also addressed psychological well-being, knowledge of the nature of menorrhagia, and personal patterns of health service use for the treatment of heavy menstruation and other health problems. 2. Methods 2.1. Sample The study took place in 10 central and local hospitals, together serving almost half of the Finnish population of 5 million people. Participants were selected in two phases in order to ensure that all the women had excessive menstrual bleeding as the main presenting health problem. First, gynaecologists at the gynaecology out-patient clinics selected women according to referral documents of patients referred between November 1995 and October 1998. Those meeting the inclusion criteria (age 35±54 years, cause of referral heavy menstrual bleeding or ®broids, no clinical ®ndings suggesting operative treatment, n 1423) were sent an invitation to participate along with a questionnaire together with the appointment information. Women were asked to mail the questionnaire before their visit to the clinic. In all, 867 (61%) women returned the questionnaire, and 729 (84%) of these were willing to participate in the study. The ®nal decision on inclusion was made on the basis of the questionnaire information. Two hundred and nineteen women were excluded because they either did not assess their menstruation as heavy or something else was reported as the primary cause for seeking gynaecological help. Thirtyone responses were rejected because of hormone replacement therapy. The ®nal study group comprised 474 women. The non-eligible women, of whom 94% had pelvic pain or pressure as the primary reason for seeking care, were older (45.9 years versus 44.4 years, P 0:001) than the eligible ones, but the two groups did not differ in terms of education or employment status.
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127
Fig. 1. Definition of a treatment preference.
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This study was approved by the ethical committees of STAKES and the participating hospitals. Women were informed that participation or non-participation would not in¯uence their treatment. All women signed an informed consent form. 2.2. Instruments Measurement of the women's preference for various treatments was based on three aspects: their perceived impact on menstruation, fertility, and the type of treatment. The preference questions were those of Warner [16] supplemented by two items. First, we asked if respondents were willing to have treatment for their menstrual problem, assuming it would not pose health risks (Fig. 1, step 1). Secondly, in an open-ended question, we asked them to name the method they would favour if all methods were suitable for them (Fig. 1, step 2). Next, using Warner's instrument, we asked for their aspira-
tions regarding three aspects of the treatment: (1) effect on periods; (2) contraceptive effect; (3) type of treatment (including major operation, i.e. hysterectomy, smaller surgical procedure such as ablation of endometrial lining or resection of single myomas, pharmacological treatment). The women were also asked to rank these three aspects of treatment in importance. We produced preference categories of hysterectomy, conservative treatment, and no-treatment. If the desired method and the important aspects of treatment were incompatible, the preference was classi®ed as unclear. Factors associated with the stage of reproductive life were age, desire for more children (yes/no), current birth control method, and satisfaction with it. Information on the severity of menstrual symptoms included the number of days of excessive bleeding and passing clots, and duration of the problem bleeding history. The amount of bleeding was measured with the four-point Likert-scale (light, normal, heavy, very heavy; excluded if not heavy or very heavy).
Table 1 Characteristics of women with heavy menstrual bleeding by pre-treatment preference (n 474) Characteristics
Pre-treatment preference Hysterectomy (n 185)
Conservative (n 113)
No treatment (n 69)
Unclear (n 107)
Stage of reproductive life Age (years) Wish for further pregnancies (yes or possibly, %) Sterilised (%) Satisfied with birth control method (%)a
44.9 (0.31) 0 44 77
43.8 (0.40)* 11*** 41 81
44.3 (0.51) 10*** 35* 78
44.1 (0.41) 3* 45 85
Severity and inconvenience of menstrual symptoms Inconvenience due to heavy bleeding Menstrual pain Number of days passing clots Perceiving periods very heavy (%) Number of days of heavy bleeding Regular periods (%) Pelvic pain or pressure (%) Duration of bleeding problems (years)
20 (0.33) 5.3 (0.26) 3.4 (0.14) 66 4.0 (0.17) 66 49 7.7 (0.8)
19 (0.41) 3.7 (0.34)*** 2.9 (0.18)* 61 3.9 (0.21) 80* 34* 8.6 (1.0)
17 (0.55)*** 3.6 (0.43)*** 2.5 (0.22)*** 42*** 3.9 (0.27) 62 41 7.7 (1.4)
20 (0.43) 5.2 (0.35) 2.9 (0.18)* 54* 3.7 (0.22) 66 46 9.1 (1.1)
Knowledge about menorrhagia Knowing not all the causes always have to be treated (%)
56
65
58
58
Sociodemographic factors Education less than 12 years (%) Unemployed (%)
62 11
39*** 5
57 16
64 10
Psychological factors Anxiety Emotional well-being Psychosomatic symptoms
36.2 (0.82) 67.7 (1.47) 33.8 (0.58)
37.2 (1.05) 67.0 (1.86) 32.1 (0.78)
35.5 (1.39) 70.0 (2.38) 30.8 (0.98)**
36.3 (1.11) 67.1 (1.92) 32.1 (0.78)
50
50
33*
48
Use of health services Previous or current treatment for heavy bleeding (%) Number of visits to A gynaecologist due to heavy bleeding Any other physician due to heavy bleeding Any physician due to other causes than heavy bleeding
0.8 (0.06) 1.10 (0.11) 3.26 (0.32)
0.59 (0.08)* 1.18 (0.13) 3.68 (0.41)
Values are means (S.E.), unless stated otherwise. a Only women needing contraception. * P < 0:05 by w2- or t-test comparing preference groups, hysterectomy preference as reference group. ** P < 0:01 by w2- or t-test comparing preference groups, hysterectomy preference as reference group. *** P < 0:001 by w2- or t-test comparing preference groups, hysterectomy preference as reference group.
0.37 (0.10)*** 0.64 (0.17)* 4.43 (0.52)
0.44 (0.08)*** 1.00 (0.14) 4.50 (0.41)*
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Menstrual pain was assessed on a scale ranging from 0 (for no pain) to 6 (for heaviest possible pain), and was multiplied by the frequency of pain (0 for never, to 2 for every period), to yield a combined score of 0±12 [24]. Perceived inconvenience due to bleeding was measured by ®ve items (effects on work performance, physical exercise, leisure, hygiene, sexual functioning) with a ®ve-point response scale (theoretical range of sum score 5±25) [24]. The existence of pelvic pain or pressure was asked by a single item (yes/no). There was one question on regularity of the cycle. Cycles with less than 10 days variation were de®ned as regular. An indirect method was used to assess women's perception of whether heavy menstruation should always be treated. First, in an open-ended question they were asked to list all the causes of heavy menstruation they knew, and secondly those causes that always need to be treated. If any of the causes given in the ®rst list was not mentioned in the second, the respondent was judged to know that not all causes always have to be treated. The sociodemographic factors recorded were level of education and employment status. The psychological factors measured were emotional well-being, anxiety, and psychosomatic symptoms. The ®rst one was measured by the ®veitem emotional well-being subscale of the RAND 36-item Health Survey [26,27], which contains the same questions as the MOS SF-36 [28], scale 0±100. Anxiety was measured by the Finnish version of Spielberg's 20-item state anxiety scale, ranging from 20 to 80 [29,30]. The frequency of psychosomatic symptoms was measured by an 18-item questionnaire previously used in the METELI study [31], scale 18±72. Higher scores in these three instruments indi-
129
cated better emotional well-being, higher level of anxiety, and more frequent psychosomatic symptoms, respectively. The questions on the use of health services dealt with previous and current treatments of heavy bleeding and number of visits to a physician (general practitioner, private gynaecologist, other private physician, visits to out-patient clinics) during the past 12 months, either for the bleeding problem or any other reason. 2.3. Statistical analysis Univariate associations were analysed by Pearson's correlations and group differences in means and proportions. Statistical signi®cance was tested by the w2-test, Fischer's exact test and t-tests. A logistic regression model was used to examine which factors were the strongest correlates of preference for hysterectomy as opposed to conservative measures. However, to avoid multicollinearity in the model, only two of gynaecological symptom variables, menstrual pain and irregular periods, were included. Of the seven gynaecological symptom variables these two showed the strongest association with the dependent variable in the preliminary analysis. After this, all other explanatory variables were entered simultaneously into the logistic model. 3. Results In this study sample, 39% of the women preferred hysterectomy and 24% conservative treatment for their bleeding
Table 2 Logistic regression for hysterectomy vs. conservative treatment preference among women with heavy menstrual bleeding
Age (years) Wish for further pregnancies (1 yes, perhaps, 0 no) Sterilised (1yes, 0no) Satisfied with birth control method (1yes, 0other) Menstrual paina Irregular periods (1 yes, 0 no) Inconvenience due to heavy menstruationb Knowing not all the causes always have to be treated (1 yes, 0 no) Education less than 12 years (1 yes, 0 no) Unemployment (1 yes, 0 no) Anxietyc Emotional well-being (RAND 36)d Psychosomatic symptomse Previous or current treatment of heavy menstruation (1 yes, 0 no) Number of visits to a gynaecologist due to heavy bleeding Number of visits to any physician
OR
95% CI
P
1.11 0.23 1.40 0.72 1.11 2.06 1.17 0.88 2.61 3.59 0.59 1.00 1.30 1.12 1.73 0.96
1.00±1.16 0.09±0.60 0.71±2.75 0.36±1.45 1.02±1.21 1.07±3.96 0.81±1.69 0.50±1.56 1.47±4.62 1.10±11.7 0.25±1.38 0.96±1.01 0.53±3.18 0.64±1.97 1.21±2.47 0.89±1.04
0.04 0.0025 ± ± 0.023 0.030 ± ± 0.001 0.034 ± ± ± ± 0.0024 ±
OR; odd ratios for preferring hysterectomy. Effective sample size is 275 women. Sixteen respondents were excluded from the analysis because of missing data for variables included in the model. Most of the missing data were in questions concerning the use of health services (n 13). The model predicted correct preferences in 74% of the observed cases. a Scale ranging from 0 to 12, higher score indicates more pain. b Scale ranging from 5 to 25, higher score indicates more inconvenience. c Scale ranging from 20 to 80, higher score indicates higher level of anxiety. d Scale ranging from 0 to 100, higher score indicates better emotional well-being. e Scale ranging from 18 to 72, higher score indicates more frequent symptoms.
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problem. Fifteen percent did not necessarily want any treatment. For 23% of the women, treatment preference could not be de®ned unambiguously, because the desired method and important aspects of treatment were incompatible. The characteristics of the women according to treatment preference are given in Table 1. Those preferring hysterectomy had more days of passing clots when bleeding and more frequent visits to a private gynaecologist than other women. None preferring hysterectomy desired more children. Women preferring conservative treatment were younger, better educated, and had more regular periods and less menstrual and pelvic pain or pressure than women preferring hysterectomy (Table 1). Those preferring no treatment perceived several aspects of their menstrual symptoms as milder, and also had less psychosomatic symptoms than those preferring hysterectomy. They also had a lower sterilisation rate, fewer previous treatments for menorrhagia and fewer visits to doctors other than gynaecologists due to heavy menstruation (Table 1). The four preference groups did not differ in terms of number of heavy bleeding days, duration of bleeding problem, rate of unemployment, levels of anxiety and emotional well-being, nor satisfaction with current birth control method. Women in all preference groups were equally likely to understand that not all causes of heavy menstruation always need treatment. The multivariate logistic regression model showed that completed family size, menstrual pain, irregular periods, and higher age, but also lower education level, more frequent consultations with a private gynaecologist, and unemployment all independently predicted preferring hysterectomy (Table 2). The model predicted correct preference in 74% of the observed cases. 4. Discussion Patients' involvement and eliciting their preferences are regarded as important in health care. In this cross-sectional study, we examined the correlates of treatment preferences of women seeking medical care for heavy menstrual bleeding in terms of reproductive, sociodemographic and psychological factors, gynaecological symptoms and use of health services. Hysterectomy and conservative treatments (including preference for no treatment) were equally favoured. However, for one-fourth of the women, the preference remained unclear because of con¯icting expectations/objectives for treatment. Completed family size, more severe menstruation-related symptoms, and higher age were associated with favouring hysterectomy over conservative treatment. Lower education and unemployment seemed to increase women's willingness for hysterectomy. In addition, more frequent visits to private gynaecologists, but not use of other health services, predicted hysterectomy preference. However, psychological factors or knowing it is not always necessary to treat heavy menstruation did not distinguish treatment preferences.
The strengths of the study were that the two-phase selection procedure enabled us to address women whose primary complaint was heavy menstrual bleeding. We also used a set of standardised validated instruments for psychological well-being [26,27,29,30]. Menstrual symptoms were asked about with the same questions commonly used in clinical practice and in a resent menorrhagia study [24]. There is no standardised instrument for measuring menorrhagic women's treatment preference. Our measurement approach considers the types of treatment in terms of their main perceived aspects and consequences, including their effect on menstruation and reproduction, but also the woman's willingness to have treatment for her complaint. There are some limitations to be considered when evaluating these results. The sample comprised patients in gynaecology out-patient clinics, who are more likely to prefer surgery and to have more symptoms than those not referred [5]. The response rate of 51% (without a reminder) can be considered rather typical. In population based surveys in Finland, the initial response rate (before a reminder) is typically round 50% [27,32]. We could not mail any reminder due to the limited time interval before women were to enter the clinic. Our results associating completed family size, more severe symptoms, higher age and lower education level with treatment preference for hysterectomy accord with previous ®ndings [5,16]. Unlike in some earlier studies, neither sterilisation [17] nor satisfaction with current birth control method [16] was associated with treatment preference. This is understandable, since in Finland the vast majority of women aged 35 years or more use effective contraception, and over 90% of them are satis®ed with the method they use [32]. In this study, as well as in the one of Sculpher et al. [15] very similar proportions of women favoured hysterectomy and uterus saving treatment(s). This con®rms the ®nding that women have quite different attitudes to various treatment alternatives [15]. In earlier studies, women scheduled for hysterectomy reportedly have higher levels of depression and anxiety than other women [20,22]. Among our study population the level of emotional well-being was lower than that of healthy women of the same age [27], perhaps because of the burden of heavy menstruation. The level of anxiety was about the same as that of healthy women [33]. However, psychological factors did not distinguish treatment preferences, except that women not wanting any treatment experienced psychosomatic symptoms (as well as menstrual symptoms) less frequently than other women. Therefore, our results do not support the interpretation suggested by previous literature [20±23] that desire for hysterectomy is linked to psychological problems. Having a previous gynaecology consultation(s) was an important determinant of hysterectomy preference in this study. In Finland, in addition to municipality-run health care services, a marked proportion of specialised out-patient services are provided by the private sector. Hospital specialists working as part-time private practitioners offer a direct
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pathway to public hospitals. Private care is especially common in the ®eld of gynaecology [34], and women using these services are likely to be better educated and living in urban areas compared to women using public services [34]. Multivariate model indicates that the association of hysterectomy preference with visits to a gynaecologist was not due to more severe symptoms. Instead, specialist consultations showed an independent relationship with women's willingness for hysterectomy even when menstrual symptoms were controlled. It is possible that specialists increase the demand for hysterectomy, but in this cross-sectional study it was not possible to analyse any causal pathways. Discussion with a gynaecologist may increase acceptance of operative treatment. It is also possible that women wanting hysterectomy consult specialists for re-assurance and re-enforcement. Clearly, more research is needed on the communication between women seeking care for menorrhagia and their physicians. Unemployed and less educated women were more likely to prefer hysterectomy than others. In Finland, there are no obvious economic incentives affecting preferences. Although the total costs of hysterectomy (at least in the short-term) are higher than those of other effective treatments [35], the out-ofpocket costs are practically the same. However, operative treatment followed by a 2±5 weeks sick leave can have different sequelae for women, depending on their work. Because better educated women are more likely to occupy higher positions and have more responsibilities, they may be less willing to accept a longish sick leave. Alternatively, our ®ndings may re¯ect diffusion of new (medical) technologies seen also among users of hormone replacement therapy [36]. The proportions opting for different treatment preferences cannot be generalised to all women with heavy menstruation, and would obviously be different among patients in primary care. There is no reliable objective method for measuring the amount of menstrual blood loss in clinical use. On the other hand, several studies have shown that the measured blood loss does not correlate very well with women's own assessment of her menstrual bleeding [24,37±40]. This might be due to the fact that blood comprises a varying proportion of total menstrual ¯uid [41]. The estimate of actual blood would be more accurate, if the total ¯uid volume is measured [42]. Visual assessments of menstrual blood loss using pictorial charts have also been developed but the results of their reliability have been con¯icting [43±46]. 5. Practice implications A woman's perception of her menstrual complaint is the basis of the need and search for medical help. Treatment decisions are mainly based on subjective evaluations and the doctor's interpretation of the patient's complaints. Not only severity of menstrual symptoms and reproductive factors guide women's treatment preferences [5,16]. As our study shows, several non-medical factorsÐeducation, employment
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status and use of gynaecology servicesÐalso in¯uence treatment preference and even more powerfully than menstrual symptoms and burden caused by them. Heavy menstrual bleeding is a true health problem and patients' complaint of it needs to be taken seriously. Not only excessive menstrual ¯ow but also other symptoms related to menstruation need to be considered when choosing treatment. Health professionals should pay more attention in motivating women for a trial of conservative treatment since only half of the women reported previous treatment for their menstrual problem. Acknowledgements The authors are grateful to the women who gave of their time to take part in the survey. We also thank the staff of the gynaecologic clinics in HyvinkaÈaÈ Hospital, Jorvi Hospital, Kanta-HaÈme Central Hospital, Keski-Suomi Central Hospital, Kymenlaakso Central Hospital, KaÈtiloÈopisto Hospital, Lohja Hospital, Peijas Hospital, Pohjois-Karjala Central Hospital, and SeinaÈjoki Hospital. This study was supported by STAKES (National Research and Development Centre for Welfare and Health) and Doctoral Programmes in Public Health at Helsinki and Tampere Universities. References [1] Buetow S. The scope for the involvement of patients in their consultations with health professionals: rights, responsibilities and preferences of patients. J Med Ethics 1998;24:243±7. [2] Bowling A, Ebrahim S. Measuring patients' preferences for treatment and perceptions of risk. Qual Health Care 2001;10(Suppl 1):i2±8. [3] Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Int Med 1980;92:832±6. [4] Coulter A. Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy 1997;2:112±21. [5] Coulter A, Peto V, Doll H. Patients' preferences and general practitioners' decisions in the treatment of menstrual disorders. Fam Pract 1994;11:67±74. [6] Montgomery AA, Fahey T. How do patients' treatment preferences compare with those of clinicians? Qual Health Care 2001;10(Suppl 1):i39±43. [7] Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA 1984;252:2990±4. [8] Coulter A, Fitzpatrick R. The patient's perspective regarding appropriate health care. In: Albrecht GL, Fitzpatrick R, Scrimshaw SC, editors. Handbook of Social Studies in Health and Medicine. Trowbridge: SAGE Publications, 2000. p. 454±64. [9] Robinson A, Thomson R. Variability in patient preferences for participating in medical decision making: implication for the use of decision support tools. Qual Health Care 2001;10(Suppl 1):i34±38. [10] Coulter A, Peto V, Jenkinson C. Quality of life and patient satisfaction following treatment for menorrhagia. Fam Pract 1994;11:394±401. [11] Coulter A, McPherson K, Vessey M. Do British women undergo too many or too few hysterectomies? Soc Sci Med 1988;27:987±94. [12] Coulter A, Klassen A, MacKenzie IZ, McPherson K. Diagnostic dilatation and curettage: is it used approprately? Br Med J 1993; 306:236±9. [13] Coulter A, Long A, Kelland J, O'Meara S, Sculpher M, Song F, Scheldon TA. Managing menorrhagia. Qual Health Care 1995;4:218±26.
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S. Vuorma et al. / Patient Education and Counseling 49 (2003) 125±132
[14] Kelleher C, Braude P. Recent advances: gynaecology. Br Med J 1999;319:689±92. [15] Sculpher MJ, Dwyer N, Browning J, Horsley S, Cullimore J. A survey of women's preferences regarding alternative surgical treatments for menorrhagia. Health Expect 1998;1:96±105. [16] Warner P. Preferences regarding treatments for period problems: relationship to menstrual and demographic factors. J Psychosom Obstet Gynaecol 1994;15:93±110. [17] Hillis SD, Marchbanks PA, Peterson HB. Clinical and pathologic characteristics of women undergoing hysterectomy after tubal sterilization. Obstet Gynecol 1996;88:246±50. [18] Ballinger CB. Psychiatric morbidity and the menopause: survey of a gynaecological out-patient clinic. Br J Psychiatry 1977;131:83±9. [19] Greenberg M. The meaning of menorrhagia: an investigation into the association between the complaint of menorrhagia and depression. J Psychosom Res 1983;27:209±14. [20] Gath D, Cooper P, Day A. Hysterectomy and psychiatric disorder. Part I. Levels of psychiatric morbidity before and after hysterectomy. Br J Psychiatry 1982;140:335±50. [21] Wijma K, Kauer FM, Janssens J. Indications for prevalence and implications of hysterectomy: a discussion. J Psychosom Obstet Gynaecol 1984;3:69±77. [22] Ryan MM, Dennerstein L, Pepperell R. Psychological aspects of hysterectomy: a prospective study. Br J Psychiatry 1989;154:516±22. [23] Thornton EW, McQueen C, Rosser R, Kneale T, Dixon K. A prospective study of changes in negative mood states of women undergoing surgical hysterectomy: the relationship to cognitive predisposition and familial support. J Psychosom Obstet Gynaecol 1997;18:22±30. [24] Hurskainen R, Aalto A-M, Teperi J, Grenman S, KivelaÈ A, Kujansuu E, et al. Psychosocial and other characteristics of women complaining of with and without actual increased menstrual blood loss. Br J Obstet Gynecol 2001;108:281±5. [25] Leventahl H, Nerenz DR, Steele DJ. Illness representations and coping with health threats. In: Baum A, Taylor SE, Singer JE, editors. Handbook of Psychology and Health. Hillsdale: Lawrence Erlbaum Associates Publisher, 1984. p. 219±52. [26] Hays RD, Sherbourne CD, Mazel RM. The RAND 36-item Health Survey 1.0. Health Econ 1993;2:217±27. [27] Aalto A-M, Aro AR, Teperi J. RAND 36 terveyteen liittyvaÈn elaÈmaÈnlaadun mittarina [in Finnish: RAND 36 as a Measure of Health-Related Quality of Life]. SaarijaÈrvi: STAKES, 1999. [28] Ware Jr. JE, Sherbourne CD. The MOS 36-item short-form Health Survey (SF-36). Part I. Conceptual framework and item selection. Med Care 1992;30:473±83. [29] Spielberger CD, Gorsuch RL, Lushene RE. Manual for the State-Trait Anxiety Inventory. Palo Alto: Consulting Psychologists Press, 1970. [30] Poikolainen K, Aalto-SetaÈlaÈ T, PitkaÈnen T, Tuulio-Hendriksson A-M, LoÈnnqvist J. The mental symptoms with related factors of young adults [Nuorten aikuisten psyykkiset oireet ja niihin liittyvaÈt tekijaÈt]. Kansanterveyslaitoksen tutkimuksia KTL, 1997. p. A2.
[31] METELI. Occupational status, working environment, and morbidity among employees of metal industry factories [in Finnish: Ammattiasema, tyoÈolot ja sairastavuus metalliteollisuuden henkiloÈstoÈryhmissaÈ]. JyvaÈskylaÈ, 1977. [32] Sihvo S, Hemminki E, Koponen P, Kosunen E, Malin-Silverio M, PeraÈlaÈ M-L, RaÈikkoÈnen, O. Contraception and use of health services. [in Finnish: Raskauden ehkaÈisy ja terveyspalvelujen kaÈyttoÈ. Tuloksia vaÈestoÈpohjaisesta tutkimuksesta 1994]. Themes. Helsinki: STAKES, 1995. Report no. 27. [33] Aro AR. Psychosocial predictors of first attendance for organised mammography screening [in Finnish: Mammografiaseulontaan osallistumista selittaÈvaÈt psykososiaaliset tekijaÈt]. Helsinki: National Health Institute, 1996. [34] Hemminki E, Sihvo S, Forssas E, Koponen P, Kosunen E, PeraÈlaÈ ML. The role of gynaecologist in women's health care: women's view. Int J Qual Health Care 1998;10:59±64. [35] Hurskainen R, Teperi J, Rissanen P, Aalto A-M, Grenman S, KivelaÈ A, et al. Quality of life and cost-effectiveness of levonorgestrelreleasing intrauterine system versus hysterectomy for treatment of menorrhagia: a randomised trial. Lancet 2001;357:273±7. [36] Topo P, Klaukka T, Hemminki E, Uutela A. Use of hormone replacement therapy in 1976±89 by 45±64 year old Finnish women. J Epidemiol Commun Health 1991;45:277±80. [37] Hallberg L, HoÈgdahl A, Nilsson L, Rybo G. Menstrual blood loss: a population study. Acta Obstet Gynecol Scand 1966;45:320±51. [38] Chimbira TH, Anderson ABM, Turnbull AC. Relation between measured menstrual blood loss and patient's subjective assessment of loss, duration of bleeding, number of sanitary towels used, uterine weight and endometrial surface area. Br J Obstet Gynecol 1980; 87:603±9. [39] Fraser IS, McCarron G, Markham R. A preliminary study of factors influencing perceptations of menstrual blood loss volume. Am J Obstet Gynecol 1984;149:788±93. [40] Higham JM, Shaw RW. Clinical associations with objective menstrual blood volume. Eur J Obstet Gynecol Reprod Biol 1999; 82:73±6. [41] Fraser IS, McCarron G, Markham R, Resta T. Blood and total fluid content of menstrual discharge. Obstet Gynecol 1985;65:194±8. [42] Fraser IS, Warner P, Marantos PA. Estimating menstrual blood loss in women with normal and excessive menstrual fluid volume. Obstet Gynecol 2001;98:806±14. [43] Higham JM, O'Brien PMS, Shaw RW. Assessment of menstrual blood loss using a pictorial chart. Br J Obstet Gynecol 1990;97:734±9. [44] Janssen CA, Scholten PC, Heintz AP. A simple visual assessment technique to discriminate between menorrhagia and normal menstrual blood loss. Obstet Gynecol 1995;85:977±82. [45] Reid PC, Coker A, Coltart R. Assessment of menstrual blood loss using a pictorial chart: a validation study. Br J Obstet Gynecol 2000; 107:320±2. [46] Wyatt KM, Dimmock PW, Walker TJ, O'Brien PM. Determination of total menstrual blood loss. Fertil Steril 2001;76:125±31.