Hum. Reprod. Advance Access originally published online on April 11, 2007
Human Reproduction 2007 22(7):1946-1952; doi:10.1093/humrep/dem080
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What variables predict generic and health-related quality of life in a sample of Brazilian women experiencing infertility?
1 Post-Graduate Program in Medicine, Assisted Reproduction Service, Embryology and Genetics Laboratory, Gynecology and Obstetrics Department, Hospital de Clinicas de Porto Alegre, Rua Florêncio Ygartua, 391/308, Porto Alegre – RS, CEP 90430-010, Brazil 2 Post-Graduate Program in Psychiatry, Federal University of Rio Grande do Sul, Brazil 3 Social Medicine Department, Federal University of Rio Grande do Sul, Brazil
4 Correspondence address. Rua Florêncio Ygartua, 391/308, Porto Alegre – RS, CEP 90430-010, Brazil. Tel/Fax: +55 51 32644152; E-mail: jurigol{at}terra.com.br
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Abstract |
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BACKGROUND: Infertility is a condition associated with impairment in several areas of life. Questionnaires about quality of life (QoL) allow the examination of the impact of health conditions in a broader way, comprehending outcomes beyond symptomatology, morbidity and mortality. The aim of this study was to identify factors associated with various aspects of QoL.
METHODS: Cross-sectional study using the following: a socio-demographic and clinical data form, the Health Survey Short Form (SF-36) which examines health-related QoL and the WHOQOL-BREF which examines general QoL.
RESULTS: 177 women seeking fertility assistance were interviewed. The sample was predominantly composed of women between 30 and 40 years old (64%), who had known about their infertility for <5 years (57%) and who had had no previous attempts at assisted reproduction (79%). Logistic regression indicated the following predictor variables: age (for better general health and physical functioning), previous in vitro fertilization (for lower vitality and poor psychological health scores), previous reproductive tract surgery (for worse general health but higher environment scores), advanced education (for higher vitality, mental health and environment scores, but for worse social relationships) and perception of worse sexual life (for lower overall scores).
CONCLUSIONS: The identification of factors associated with better or worse QoL, in its different domains, is vital in order to propose and test scientifically based interventions on infertile women.
Key words: infertility/quality of life/SF-36/WHOQOL
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Introduction |
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Maternity has always played an important role in the human life cycle, and in many societies, there can be pressure for women to conceive. In a society with high rates of unemployment and low social status for most of the population, maternity could be seen as the most important and rewarding social role for the woman (Abbey et al., 1992
; Suderland, 1990). In contrast, infertility, defined as the inability to conceive after 12 months of regular unprotected intercourse, is a prevalent condition and represents a significant social and public health problem (Khayata et al., 2003). It is estimated that such a condition may affect up to 15% of western couples (Oddens et al., 1999; Passos et al., 2001). In developing regions, such as Africa and Brazil, the prevalence tends to be further elevated; this may be associated with the higher frequency of infectious diseases (Cates et al., 1985; Passos et al., 2001; Dyer et al., 2005).
Furthermore, the access to the diagnosis and treatment of infertility in such regions is not provided as extensively as it is in the first world. Infertility itself is rarely acknowledged as a serious health problem due to overpopulation and the need for population control (Nachtigall, 2006). In Brazil, the assisted reproduction services are either private or they are located in university tertiary hospitals. In the latter (which are free of charge), the majority of the patients are from low socio-economic classes. Even though these services are part of the public health system, medication used in the treatment is not provided for free and is a considerable cost to these patients. Because it takes an average of 6 months for the first appointment to be made, patients tend to have high expectations of the medical personnel, and see them as problem solving agents (Leite et al., 2005).
Even though men are not immune to psychological distress associated to infertility, women seem to carry a heavier burden and appear to be more vulnerable to its negative social and economical consequences (Wright et al., 1991; Abbey et al., 1992; Collins et al., 1992; Oddens et al., 1999; Wischmann et al., 2001; Fekkes et al., 2003 Dyer et al., 2005; Ragni et al., 2005). Experiencing infertility is described as a time of emotional uncertainty, hope and euphoria. The experience itself is determined by a routine of activities focused on the possibility of the pregnancy, including frequent visits to physicians, examinations and treatment procedures (Leite et al., 2005). Factors such as age and frustrating in vitro fertilization (IVF) attempts can be associated with emotional instability, anxiety and depression in infertile women (Matsubayashi et al., 2001; Smeenk et al., 2001; Wischmann et al., 2001; Khayata et al., 2003; Fekkes et al., 2003).
The impact of health on quality of life (QoL) has been an increasingly important topic in recent scientific literature (Katschnig et al., 1997). Through the World Health Organization Quality of Life (WHOQOL) group, the WHO has defined QoL as ‘people's perception of their position in life in the context of the culture and value systems in which they live in relation to their objectives, expectations, standards and concerns’, emphasizing the multidimensionality, subjective perception and presence of positive and negative dimensions in its theoretical conceptualization (The WHOQOL-Group, 1995). The development of the WHOQOL instruments (WHOQOL-100 and WHOQOL-BREF) is the result of an initiative, which aims at fulfilling the need for a genuine international QoL assessment. They permit the inclusion of the consideration of patients' QoL in treatment decisions, approve new pharmaceuticals and policy research and allow the possibility of carrying out multicentre collaborative studies. Furthermore, they are seen as a restatement of the WHO's commitment to the promotion of a holistic approach to health and healthcare (The WHOQOL Group, 1995).
The introduction of the QoL concept has made it possible to measure the impact of interventions or health conditions in a broader way, comprehending outcomes beyond symptomatology, morbidity, mortality and emotional symptoms related to pathologies (such as depression or anxiety). Moreover, it emphasizes the patients' reported outcomes, since the patients are considered to be most capable of measuring their own condition subjectively in several areas of their lives (Wiklund, 2004). Berlim and Fleck (2003) state that there is disagreement between doctors and patients about the perception of severity of symptoms and therapeutic success. Clinicians tend to measure the results of interventions through the decrease in symptoms and the involution of the disease. Patients do so through the feeling of comfort or the ability to resume daily activities satisfactorily.
Among the studies on QoL, we point out that there are two different concepts considered to be similar. The QoL construct, such as defined by the WHOQOL Group, is widely comprehensive, involving health aspects (items concerning physical and psychological factors), as well as others aspects referring to social relationships, environment and spirituality. It is applied on healthy and unhealthy subjects, therefore allowing the identification of the impact of different conditions in several areas of life (The WHOQOL Group, 1995; Power et al., 1999; Saxenna, 2001).
The health-related QoL construct (HRQL) has frequently been referred to as a synonym of QoL. However, its conceptual basis comprehends only the health aspects concerning QoL. Therefore, its definition and measurement instruments do not involve areas not related to clinical phenomena and its direct impacts (such as functionality and vitality) (Katschnig et al., 1997). Because it focuses on areas associated with health, it detects alterations related to them more specifically (Hunt, 1997).
Although studies on symptomatology for anxiety and depression in infertile women have been developed since the 1980s (Matsubayashi et al., 2001), few recent investigations have focused on the impact of infertility on HRQL (Fekkes, 2003; Ragni et al., 2005).
Ragni et al. (2005) assessed 1000 couples, who would undergo IVF, through the Health Survey Short Form (SF-36) and detected that the impact on the subjects' HRQL was limited. When compared to normative data from the Italian population, infertile patients did not differ from controls in most domains. Feekes et al. (2003) compared symptomatology, functionality and cognitive measures between a sample of 425 men and 447 women waiting for IVF and the general Dutch population (obtained through normative data), and concluded that subjects with infertility had higher levels of social and emotional problems.
As far as we are aware, there are no published studies evaluating the impact of different clinical aspects of infertility on patients' generic QoL. Furthermore, the few published papers focusing on HRQL have been carried out in developed countries. The aim of this study was to identify the determining variables for the perception of better or worse QoL (both generic and health-related) in a sample of Brazilian patients experiencing infertility.
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Materials and Methods |
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Subjects
From September 2004 to February 2005, 179 out of 289 patients (61.9%) seen at the assisted reproduction service of a university hospital were asked to participate in this prospective cross-sectional study. The 179 subjects (who were actually present with a scheduled appointment) were invited to complete the instruments while waiting for their medical appointment. The inclusion criterion was patients of the assisted reproduction service who considered themselves to be infertile. All respondents were informed about the objectives of the study and the confidentiality of the data. Subjects signed consent forms. The project was approved by the Research Ethics Committee of the Hospital de Clinicas de Porto Alegre. Two subjects (1.2%) declined to participate in the study. The sample came to 177 women.
Procedures
Interviews were carried out by students trained in the application of the following instruments:
(i) A socio-demographic and clinical data form which assesses education, marital status, length of relationship with the present partner, changes in dialogue with the partner, socio-economic class, age, duration of conception attempts, number of previous attempts at reproduction techniques, reproductive tract surgeries, type of assisted reproduction technique and sexual life satisfaction (self-reported);(ii) The WHOQOL-BREF which is a generic QoL assessment instrument, developed by the WHO along with several countries representing different cultures (The WHOQOL Group, 1998). It has been translated and validated into Portuguese (Fleck et al., 2000
(iii) The Health Survey Short Form (SF-36) which is a multidimensional questionnaire of HRQL. SF-36 has been widely used in a series of studies in different areas of knowledge. It assesses negative health aspects (such as diseases or perception of limitations) as well as positive ones (such as well-being). The scores range from 0 to 100, with 0 as an indicator of the worst HRQL and 100 of the best. It is comprised of eight domains (physical functioning, role physical, social functioning, bodily pain, mental health, role emotional, vitality and general health) (Ware and Sherbourne, 1992
Statistical analysis
The clinical and socio-demographic variables were analysed through descriptive statistics. Data distribution was evaluated by the Kolmogorov–Smirnov test, showing asymmetrical distribution of the scores in the WHOQOL-BREF and SF-36 domains. Logistic regression was used to determine clinical and socio-demographic predictors for the scores in each domain of both instruments. The model that included the scores of each domain separately as dependent variables was tested. The independent variables (predictors) included were the ones that showed P < 0.2 in the bivariate tests: age, education, previous reproductive tract surgery, duration of conception attempts, sexual life and the use of previous assisted reproduction techniques. The socio-economic class variable was not included, because it showed elevated correlation with education (Spearman r = 0.542, P < 0.01), therefore, determining colinearity in the tested model. The significance level adopted was P < 0.05.
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Results |
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Table 1 describes the characteristics of the sample (n = 177) included in further logistic regressions. Complementary information which failed to demonstrate differences in bivariate tests (and therefore not included in the table) follows: the proportion of legally married patients was 60.8%, and the average length of relationship with the current partner was 9.4 years (SD = 4.6). In terms of socio-economic class, 39.8% belonged to class C and 13.6% to classes D and E, representing medium and lower levels. Concerning dialogue with the partner, 61% reported there was no change and 33% described better dialogue after knowing about their infertility.
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Table 2 describes the results of logistic regressions in each domain of the SF-36 instrument, indicating which clinical and socio-demographic variables are determinants for HRQL perception. The physical functioning domain measures the extent to which health limitations interfere with physical activity. It shows age as predictor, indicating that an increase in age represents better scores. The general health domain is described as a personal assessment of current health and resistance to diseases. It shows increased age as a predictor of better scores and previous reproductive tract surgery (on one occasion) as a predictor of lower scores. The vitality domain is described as the dyad of feeling energetic versus tiredness and exhaustion. As predictors, it shows IVF to be associated with lower scores and 9–11 years of education to be associated with lower scores compared to that with 11 or more years of study. In the mental health domain, which measures depression/anxiety and emotional control, an education of 9–11 years also represents a higher chance of lower scores when compared with an education of 11 or more years. Scores in the SF-36 domains, role-emotional, role-physical, bodily pain and social functioning, were not determined by any of the predictors examined.
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Table 3 describes the results of logistic regressions of each WHOQOL-BREF QoL domain; three domains and the overall score showed significant predictors in the model proposed (Table 3). The overall score represents an assessment on QoL and health satisfaction. It was reflected by the subjective evaluation of sexual life. The perception of a worse sexual life was associated with a lower overall score. The psychological domain measures happiness with life, concentration, positive feelings, body image, negative feelings and personal beliefs. Having undergone previous IVF was associated with worse scores in this domain. The environment domain assesses feelings about safety, the home environment, financial resources, access to information and healthcare, leisure and transportation. Previous reproductive tract surgery and education of 8 years of study or less were both predictors of lower scores in this domain. The social relationships domain, which assesses the level of satisfaction in relationships with other people, support and sexual life, showed an education of 9–11 years as a predictor of higher scores when compared with 11 or more years of study. The WHOQOL-BREF physical domain did not show statistical significance with any of the predictors included. Similarly, Role-Emotion, Role-Physical, Bodily Pain and Social Functioning (SF36 domains) were not determined by such predictors.
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Discussion |
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This article aims to identify, in a sample of Brazilian female patients, the clinical and socio-demographic variables associated with better or worse scores in the different domains for generic and HRQL. In the current scientific literature, there are no studies assessing such measures in the cultural contexts of developing countries. The few investigations published so far have been carried out in European countries (Fekkes et al., 2003
; Ragni et al., 2005). The authors believe that one important initial step in developing cross-cultural studies on wide and complex constructs such as QoL is to describe in detail its determinants in as many cultures as possible. It is important to emphasize that Brazil is a marked pro-natalist country, which probably shapes the way that failure to conceive children is seen. Some sample characteristics of the present study should be highlighted. First, the average education level is higher than that of the overall Brazilian population. This is partly due to the fact that the investigation was not community-based, but limited to people awaiting infertility treatment. Furthermore, even though the treatment is freely offered by the public health system, the medication involved has to be provided by the couples. This therefore might act as an economic filter. These particularities may suggest that the sample profile is somewhat comparable to that of the developed regions, which would permit cross-cultural comparisons. The role that some characteristics have on the QoL (such as race and religion) remains to be investigated both locally and cross-culturally.
The sample was recruited in a specialized department of outpatients at a university hospital. It shows high QoL scores in the different domains, as is demonstrated in the medians ranging from 62.5 to 100. Comparisons of groups with extreme scores were not possible in this study due to the low number of subjects with very low scores. This has relevance in the results, as the logistic regression analyses compared the subsample showing scores above the median with the other having scores below it. However, the latter subsample presented relatively elevated scores. Thus, the statistically significant variables indicate considerable impacts on the QoL of this population.
These findings are in accordance with the results described by Ragni et al. (2005) and Fekkes et al. (2003) who did not find significant differences when comparing the data obtained by the instruments SF-36 and The Hopkins Symptom Checklist for infertile women and the normative data of Italian and Dutch populations. One hypothesis is that the high scores on the QoL domains are due to the fact that the psychosocial impact of infertility is perceived as less intense than that of other physical diseases (Oddens et al., 1999).
In the present study, increased age was associated with better scores in the general health and physical functioning domains. The other domains showed the same tendency, but with no statistical significance. Fekkes et al. (2003) describe that infertile women between 21–30 years old showed more social and emotional problems when compared with the normal population. This is opposite to findings in older infertile women. This may be explained by older women having had more life experience and therefore better coping strategies that would make them more able to deal with the infertility problem. Only 6.3% of women reported worse sexual life after the subjective perception of infertility. This perception represents an increase in the chance of them considering their overall QoL to be worse comparatively to those who perceive their sexual life as the same or better. Although the impact of infertility on the couple's relationship remains controversial, it seems that the deleterious repercussion of it in sexual satisfaction is well established (Coëffin-Driol and Giami, 2004). Our findings are in concordance with the ones reported by Collins et al. (1992), who described that 30% of the women claimed that infertility had a negative impact on their sexual life. Lieblum et al. (1998) also indicated that for couples whose sexual adjustment is tenuous, infertility treatment would play a role in determining a negative impact on sexual performance and pleasure. Lee et al. (2001), while comparing men's and women's sexual and marital satisfaction, suggested that wives facing infertility expressed less marital and sexual satisfaction than that of their husbands. In fact, Andrews et al. (1992) described that the reduction of sexual satisfaction and marital conflict could represent a pathway through which infertility impacts on the woman's QoL.
Previous reproductive tract surgery was also a factor associated with the scores for general health and environment. Surgery determined lower scores for general health. This is in contrast to the findings described by Ragni et al. (2005). A suggested hypothesis is that the need for reproductive tract surgery may be related to a feeling of fragility towards health, which could be amplified by the couple's infertility condition. Concerning the environmental domain, surgery determines higher scores, indicative of a better perception of the environment. As far as we know, there is no such description in the literature. It could be hypothesized that two or more surgeries may be associated with easier access to healthcare, and more family attention and support, therefore leading to higher levels of satisfaction with the environment components. This issue would be particularly relevant in developing regions contexts, where access to healthcare is usually difficult and not widely available. This hypothesis, however, needs further investigation.
We point out that both instruments show, in the analysis model proposed, an important performance difference. Whereas four out of five WHOQOL-BREF domains seem to be able to identify statistically significant predictors in the independent variables included, the same occurs in only four out of eight SF-36 domains. Such a discrepancy refers to the controversy of using generic or specific QoL measures, such as the HRQL ones. Our findings indicate that narrowing the proposed outcomes (e.g. using only health-related ones) can lead to the loss of capacity to detect the impact of certain factors and consequently the underestimation of their importance in the context of the patient's life. Another important issue is the possibility of comparing the scores obtained through both instruments to other clinical populations. This is due to the fact that both SF-36 and WHOQOL-BREF are instruments not restricted to determined health conditions. Thus, they make it possible to test whether the impact of infertility is as wide and intense as other clinical conditions (e.g. HIV or breast cancer).
Some limitations of the present study should be taken into account. First, subjects in different stages of the infertility investigation and treatment were included in the same group, which may lead to heterogeneity. Nevertheless, the demographic description analysis demonstrated that most of the women had not previously been exposed to any treatment technique. A second limitation is related to the cross-sectional design, which does not permit any causal inference. Longitudinal studies would allow the confirmation of some causal assumptions derived from the described associations. Additionally, we point out that this is a clinically based investigation, which could affect the external validity of the findings.
The lower and medium education terciles, when compared with the upper one, are associated with worse scores in the environment, vitality and mental health domains. Conversely, they represented a higher chance of performing better in the social relationships domain. There are no descriptions in literature explaining the association of educational level to the QoL perception in this population. Nevertheless, the variable education may represent an indicator that holds for other social variables (income, housing, need for working instead of studying, level of mental health, etc.). This determines that such relationships must be more specifically studied through, especially designed investigations. The analysis of the previously used assisted reproduction technique is a topic of interest in literature. Ragni et al. (2005) reported that previous IVF is associated with worse scores in the mental health domain and suggested the investigation of how other techniques impact on QoL. Shaw et al. (1988) indicated that several couples consider IVF as the ‘end of the line’ treatment, which would cause great psychological distress. Berg and Wilson (1990) described that couples who undergo this technique show higher anxiety levels and emotional disturbances when compared with general population controls. Fekkes et al. (2003), however, when investigating women who were planning IVF, did not report differences in their psychological complaints. Our findings show that awaiting IVF is associated with lower scores in the psychological and vitality domains, and that other techniques do not represent impact variables in the studied QoL domains. Such information is particularly relevant as low adherence to treatment is related to psychological factors (Goverde et al., 2000; Olivius et al., 2004; Smeenk et al., 2004). Therefore, our study suggests that the failure of previous IVF attempts may determine an increase in treatment dropout rates since IVF failure appears to have a direct impact on the psychological QoL domain. The impact that previous IVF attempts failures have in men is also a relevant topic to be addressed in further investigations being carried out at the moment.
Finally, we believe that the identification of factors associated with the increase or decrease in QoL is crucial in order to propose and test scientifically based interventions. Therefore, these specific interventions may be more effective not only to treat infertility, but also to promote improvement of the QoL of infertile patients. It is observed that infertility has wide repercussions in women's lives, indicating that a suitable treatment approach must be both interdisciplinary and comprehensive.
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Submitted on July 31, 2006; resubmitted on February 26, 2007; accepted on March 5, 2007.
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