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Illness perceptions among osteoporotic men and women: correlates and gender differences
Original Articles
Keywords Osteoporosis Illness perceptions Gender differences
Offer Emanuel Edelstein, PhD School of Social Work, University of Haifa, Haifa, Israel, 31950 Perla Werner, PhD Department of Gerontology, University of Haifa, Haifa, Israel, 31950 Rivka Dresner-Pollak, MD Endocrinology and Metabolism Service, Department of Medicine, Hadassah-Hebrew University Medical Center, Jerusalem, Israel, 91120 Karen Tordjman, MD Institute of Endocrinology, Metabolism and Hypertension. Tel Aviv Sourasky Medical Center, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, 69978 Anat Jaffe, MD Endocrinology and Diabetes Mellitus unit, Hille Yaffe Medical Center, Hadera, Israel 38100 Yoel Toledano, MD Endocrinology and Diabetes Mellitus unit, Hille Yaffe Medical Center, Hadera, Israel 38100 Iris Vered, MD Institute of Endocrinology, Chaim Sheba Medical Center, Tel Hashomer, Israel. Sackler faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, 69978 E-mail: [email protected]
Online 5 July 2012
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Illness perceptions among osteoporotic men and women: correlates and gender differences Offer Emanuel Edelstein, Perla Werner, Rivka Dresner-Pollak, Karen Tordjman, Anat Jaffe, Yoel Toledano and Iris Vered Abstract Background: Although osteoporosis is a major public concern, little research attention has been paid to evaluating the manner in which osteoporotic patients perceive their illness. The aim of the current study was to examine osteoporotic patients’ cognitive and emotional illness representations and to see, specifically, if any differences could be correlated with gender. Methods: A convenience sample of 102 women and 100 men (mean age 66 years in both groups) who were diagnosed with osteoporosis, and who were attending bone and mineral clinics at four major medical centers in Israel, participated in the study. Participants were interviewed face-to-face at the clinics or in their homes, using an adapted version of the Illness Perceptions Questionnaire (IPQ). Emotional illness representations were assessed using the state anxiety subscale from the State-Trait Personality Inventory (SPTI). Results: Participants perceived osteoporosis as a chronic but controllable disease. They perceived the disease as having few symptoms and mild consequences on their lives. Conclusions: Osteoporotic patients maintained a logical cognitive and emotional structure of their illness. Regarding gender differences, findings showed that women were more pessimistic than men regarding most of the illness representations’ dimensions. Gender differences in illness representations suggest women and men may benefit from different intervention programs, tailored according to their unique perceptions. WPMH GmbH. Published by Elsevier Ireland Ltd.
Introduction Osteoporosis is a skeletal disorder characterized by compromised bone strength, predisposing a person to an increased risk of fractures [1]. Until the occurrence of the first fracture, osteoporosis presents no challenges to quality of life. Thus, it is considered to be a ‘‘silent disease’’, and many patients are treated only after the first fracture. Since osteoporosis is common among postmenopausal women, it is frequently regarded as a ‘‘Caucasian women’s disease’’. However, the disease is also prevalent among men. While it has been reported that approximately 8 million women
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in the United States have osteoporosis, as many as 2 million men also suffer from the disease [2]. Furthermore, the life-time risk for an osteoporotic fracture among women has been estimated at 53% and among men at 21% [3]. More importantly, it has been shown that, compared to women, men have a higher mortality rate from hip fractures and a lower frequency of screening and treatment [4]. These figures stress the need to understand the consequences of this disease in both genders. In the last three decades, research has emphasized the importance of exploring health cognitions in an effort to understand patients’ coping process with their illness and
WPMH GmbH. Published by Elsevier Ireland Ltd.
Original Articles engagement in health behaviors. According to the Self Regulation Model (SRM) [5] patients use five different cognitive dimensions (called illness representations) in order to understand their condition. These dimensions are: Identity (the label the patients give to their illness and the way they perceive its symptoms); Timeline (the perceived duration of the illness); Consequences (the perceived impact of the illness); Cure/control (the perceived ability to cure or control the illness); and Causes (the beliefs about the factors responsible for causing the disease). In addition to the construction of cognitive representations the model assumes that the patients’ condition also evokes emotional representations such as anger, depression, anxiety, fear and nervousness [5]. Studies assessing illness representations in a variety of diseases, such as Addison’s disease, chronic fatigue syndrome, heart conditions and chronic renal failure [6–9], have shown that there is a logical pattern of correlations between these dimensions. For example, strong illness identity is usually correlated with a lower sense of control and with pessimistic cognitions about the duration and the consequences that the illness carries. Moreover, strong illness identity and negative beliefs about the illness duration and consequences were also found to be correlated with negative emotional illness representations. Although osteoporosis is a major public concern, to the best of our knowledge no study has evaluated the SRM among osteoporotic patients and only one study has partially assessed the model in patients who experienced traumatic hip fractures [10]. That study showed that patients believed they had only limited ability to control the situation and that hip fractures had a mild impact on their lives. Despite its importance, that study has two major limitations for the assessment of illness representations regarding osteoporosis: the participants were not osteoporotic and only two of the five dimensions comprising the SRM were estimated. Thus, the first aim of the current study was to assess illness representations in osteoporotic patients including the relationships between the different dimensions. Our second aim was to assess whether cognitive and emotional representations vary by the gender of the patient. Since the SRM hypothesizes that illness representations
might be affected directly and indirectly by the social context [11], it is reasonable to assume that gender plays a role in their construction. A limited number of studies have examined the associations between gender and illness representations, using the SRM as a theoretical framework [12–17], and they have not reached consistent conclusions regarding the impact of gender on all the dimensions of illness representations. For instance, some studies [16,17] found that, compared to men, women tended to report more symptoms and a lesser feeling of control. However, for the timeline and consequences dimensions some studies found that men reported their disease carried more consequences on their lives [14] or had a longer timeline [7], while other studies showed exactly the opposite [16,17]. Thus, the second aim of the present study was to expand this body of knowledge by examining gender differences in illness representations.
Methods Participants A convenience sample of 202 participants (102 women and 100 men), who were attending bone and mineral clinics at four major medical centers in Israel, were assessed between January 2006 and September 2007. To be included in the study, patients had to be diagnosed as having osteoporosis according to the World Health Organization definition (i.e., density scores of 2.5 standard deviations or more below the mean in a young reference population) [1], with or without related fractures and to speak Hebrew. Patients who were suffering from the following conditions were excluded from the study: bone diseases other than osteoporosis; cognitive or psychiatric disorders; a disease that severely affected quality of life such as unbalanced diabetes, lung or heart disease and cancer. The socio-demographic and health characteristics of the sample are presented in Tables 1 and 2. The participants’ mean age in both genders was about 66 years and their level of education was relatively high. Compared to men, higher percentages of widows or divorce´es and participants with low income were found among women. Only half of the participants had an osteoporotic fracture; the mean age at
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Original Articles Table 1 Socio-demographic characteristics Total sample (n = 202) Women (n = 102) Men (n = 100) Sig.y Mean age (S.D.) 66.5 (10.1) Mean education years (S.D.) 15 (3.3) Marital status (% / n) Married 71.8/145 Widowed 12.9/26 Divorced 9.9/20 Single 5.4/11 Income (% / n) 4000–5999 NIS 22.3/45 6000 + NIS 72.7/147 Refused 5/10
66.5 (9.5) 15 (3)
66.8 (10.7) 15.6 (3.6)
n.s. n.s.
62.7/64 18.6/19 14.7/15 4/4
81/81 7/7 5/5 7/7
x2(3) = 13.3, P<0.001
29.4/30 62.8/64 7.8/8
15/15 83/83 2/2
x2(3) = 24.1, P<0.01
Sig., significance; S.D., standard deviation; n.s., not significant; NIS, new Israeli shekels. y Differences between men and women only.
occurrence of the first fracture was around 60 years in both groups, and the mean time since the occurrence of the most recent fracture was 6.6 years. Compared to men, women had lower bone density scores in the lumbar spine, and had been diagnosed as having osteoporosis at a younger age. However, no statistically significant differences were found between the groups in the number of fractures they had sustained or the time since occurrence of the most recent fracture.
Measures The measures listed below were used. Illness representations According to the SRM [5], two types of illness representations were assessed – cognitive and emotional.
(1) Cognitive illness representations were measured using the Illness Perception Questionnaire [18], which was adapted to measure cognitive illness representations regarding osteoporosis. Thirty five items were assessed tapping five dimensions: identity (6 items), causes (13 items), timeline (3 items), consequences (7 items) and cure/control (6 items). The items for four dimensions (causes, duration, consequences, cure/control) were rated on a 5point Likert-type scale ranging from 1 = ‘‘strongly disagree’’ to 5 = ‘‘strongly agree’’. An overall subscale was created for each dimension by averaging the items. The internal consistency of the timeline, consequences and cure/control subscales was good to excellent (Cronbach’s a = 0.91, 0.81, and 0.77, respectively). The identity subscale included six osteoporosis-related
Table 2 Health characteristics
Mean (S.D.) number of years elapsed since initial diagnosis Mean (S.D.) number of fractures Mean (S.D.) age at occurrence of the first fracture Mean (S.D.) t-scores in lumber spine Mean (S.D.) t-scores in femoral neck Had an osteoporotic fracture (% / n) Mean number of fractures (S.D.) Mean years elapsed since the occurrence of the most recent fracture (S.D.)z Sig., significance; S.D., standard deviation; n.s., not significant; y Differences between men and women only. z Figures were calculated only for patients with fractures.
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Total sample
Women
Men
(n = 202)
(n = 102)
(n = 100)
7.4 (5.6) 1.1 (1.4) 58.8 (10.9) 2.4 (0.9) 2.3 (0.8) 51.5/104 1.2 (1.4) 6.6 (5.9)
9.0 (6.2) 1.3 (1.4) 60.1 (10.6) 2.6 (0.9) 2.4 (0.8) 55.8/57 1.3 (1.3) 6.0 (5.5)
5.8 (4.5) 1.0 (1.4) 57.1 (11.8) 2.3 (0.9) 2.3 (0.9) 47/47 1.1 (1.4) 7.2 (6.5)
Sig.y t(200) = -4.2, P<0.01 n.s. n.s. t(200) = 2.4, P<0.05 n.s. n.s. n.s. n.s.
Original Articles symptoms: pain, shortness of breath, sleep disturbances, weakness, loss of height, back bending. Each item was rated on a scale ranging from 0 = ‘‘not at all’’ to 4 = ‘‘all the time’’. For analysis purposes, all items receiving an answer of 1 and above were coded as 1 and a total score for this subscale was obtained by summing the answers to each item. Cronbach’s a for this subscale was 0.68. Finally, for the causes dimension, in accordance with the recommendation of Weinman et al. [18] we conducted a factor analysis including the 13 items in the scale using varimax rotation. Five factors with Eigen values of 1 and over emerged from this analysis, and subsequently five indices were created by averaging the items in each factor: (i) The others’ responsibility index included three items stating that the cause of the disease is other people’s responsibility, past malpractice, and other diseases (Cronbach a = 0.68). (ii) The life style index included three items relating to diet, lack of exercise and general behavior (Cronbach a = 0.65). (iii) The Mental state and mood index included two items stating that the causes of the disease were bad mood or high level of mental pressure (Pearson’s correlation = 0.75). (iv) The Genetics or chance index included two items reflecting genetics or chance responsibility of osteoporosis (Pearson’s correlation = 0.35). (v) The External causes index included three items related to air pollution, viral disease and divine supervision. Internal consistency of this index was low (Cronbach alpha = 0.50) and therefore this factor was not included in further analyses. (2) Emotional illness representations were measured using the 10 items from the Hebrew version of the State Trait inventory [19] of the State–Trait Personality Inventory (STPI) [20] which measure state anxiety. These items were adapted to measure state anxiety evoked by osteoporosis. For example, ‘‘I am worried about osteoporotic fractures’’; ‘‘I am getting anxious when thinking about osteoporosis’’. Each item was rated on a 4-point Likert-type scale ranging from 1 = ‘‘not at all’’ to 4 = ‘‘very much’’. An overall index was created by summing all the items. This subscale showed excellent internal consistency in the present study (Cronbach’s a = 0.91).
Demographic and health data These included information regarding gender, age, education level, income, number of children and marital status. Data regarding the number of fractures the participants had, bone density scan scores and time since the last fracture were collected from the patients’ medical records. Procedure A computerized search of the medical records was performed by the physicians at each clinic in order to locate men and women who were treated for osteoporosis during the 2 years preceding the study, resulting in 162 men and 165 women. A total of 46 men and 50 women were excluded as they also had a diagnosis for other bone diseases, or for cognitive or psychiatric disorders besides having osteoporosis. The potentially eligible 116 men and 115 women were approached by the physician and presented with the aims of the study; 16 men and 13 women refused to participate for personal reasons, resulting in a final sample of 202 participants (87% response rate). Once the participants signed informed consent forms, they were contacted by the researcher and were interviewed face-to-face using a structured questionnaire. Interviews took place at the clinics (102 women and 77 men) or in participants’ homes (23 men). Ethical considerations The research protocol was approved by the Helsinki committee of each medical center. All participants signed informed consent forms. To protect the participants’ privacy, the data obtained from their medical records and interviews were coded anonymously to a password protected file. Statistical analysis The statistical analysis included descriptive statistics (means, standard deviations, percentages) to describe the sample and the main study variables (cognitive and emotional representations and background data). Additionally, Pearson’s correlations were calculated to assess correlations between the illness representations’ dimensions. Finally, in order to assess gender differences, t and x2 tests were performed according to the type of the variable.
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Original Articles Table 3 Identity subscale and gender based differences Identity
Total sample
Men
Women
t
Possible
dimension
(n = 202)
(n = 100)
(n = 102)
(d.f. = 200)
Pain Shortness of breath Sleep disturbances Weakness Loss of height Back bending
1.9 1.0 1.2 1.3 2.2 1.8
1.7 1.0 1.2 1.4 2.1 1.7
2.1 1.0 1.2 1.2 2.3 1.9
2.6* n.s. n.s. n.s. n.s. n.s.
(1.0) (0.2) (0.5) (07) (1.0) (1.0)
(0.9) (0.2) (0.7) (0.8) (1.0) (1.0)
(1.1) (0.3) (0.5) (0.7) (1.0) (1.0)
y
scale range 1–4 1–4 1–4 1–4 1–4 1–4
d.f., degrees of freedom; n.s., not significant. y Differences between men and women only. * P<0.001.
Correlations between cognitive representation indexes
Results Cognitive illness representations As shown in Table 3, the participants identified very few symptoms associated with the disease. The most frequent symptoms were: loss of height and back bending. As shown in Table 4, participants perceived osteoporosis as a chronic disease but also as a controllable one. In addition, osteoporosis was perceived as having only mild consequences on life. Finally, participants tended to believe that osteoporosis was caused by genetics or chance.
Several statistically significant correlations were found between the cognitive representations indices. Participants who identified more symptoms, reported greater consequences (r = 0.55, P <0.01) and less sense of control (r = -0.18, P <0.01). Participants who reported greater consequences also had a weaker sense of control (r = -0.28, P<0.01) and tended to believe their disease was caused by their life style (r = 0.19, P <0.01). No statistically significant correlations were found between timeline and all other illness representations.
Emotional illness representations:
Correlations between cognitive and emotional representations:
As shown in Table 4, participants reported only mild levels of anxiety.
Participants who reported on higher levels of anxiety, also tended to identify more
Table 4 Cognitive/emotional representations indexes and gender based differences Total sample (n = 202) Cognitive representations Identity Timeline Consequences Cure/control Causes others’ responsibility Life style Mental state and mood Genetics or chance Emotional representations State anxiety
2.1 4.4 2.5 3.8 1.9 2.5 1.3 3.4
(1.3) (0.9) (0.9) (0.7) (1.1) (1.2) (0.6) (1.3)
21.1 (6.3)
Men
Women
(n = 100) 1.9 4.2 2.3 4.0 2.0 2.4 1.3 3.2
(1.4) (1.0) (0.8) (0.7) (1.2) (1.1) (0.6) (1.3)
19.2 (5.3)
d.f., degrees of freedom; n.s., not significant. y Differences between men and women only.*P<0.05; **P<0.001.
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(n = 102) 2.2 4.5 2.7 3.7 1.9 2.6 1.4 3.4
t
Possible y
(d.f. = 200)
range
(1.2) (0.8) (1.0) (0.8) (1.1) (1.2) (0.6) (1.4)
n.s. 2.2* 3.3** 2.4* n.s n.s n.s n.s
0–6 1–5 1–5 1–5 1–5 1–5 1–5 1–5
23.0 (6.6)
4.5**
10–40
Original Articles symptoms (r = 0.35, P <0.01), believed the disease was less controllable (r = -0.28, P<0.01) and had severe consequences on their lives (r = 0.47, P <0.01). No statistically significant correlations were found between anxiety level and the timeline or the causes dimensions.
Correlations between participants’ socio-demographic and health characteristics and illness representations Several statistically significant correlations were found between participants’ socio-demographic and health characteristics and the illness representations. The participants’ level of education was positively correlated with the belief that the disease was more chronic (r = 0.20, P <0.01) and was negatively correlated with the consequences dimension and level of state anxiety (r = -0.14 and -0.14, P<0.05, respectively). Having a greater number of fractures was positively correlated with more pessimistic perceptions about the disease’s consequences, symptoms and related state anxiety (r = 0.41, 0.38, and 0.29, P<0.01, respectively) and was negatively correlated with the belief that it was controllable (r = -0.28, P<0.01). Higher bone density score at the lumbar spine was positively correlated with the belief that the disease was more controllable (r = 0.27, P <0.01) and was negatively correlated with consequences and symptoms identifications (r = -0.24, and -0.19, P<0.01, respectively). The length of time that had elapsed since the participants were initially diagnosed as having osteoporosis was positively correlated with more pessimistic perceptions about the disease’s timeline, consequences and symptoms (r = 0.28, P<0.01; r = 0.14 and 0.14, P<0.05, respectively). Finally, the length of time elapsed since the occurrence of the most recent fracture was positively correlated with the belief that osteoporosis was more controllable (r = 0.26, P<0.01). No statistically significant associations were found between participants’ age and illness representations dimensions.
Gender differences in cognitive and emotional representations Although only a few gender-related differences were found, interesting differences emerged in some of the dimensions. No statistically significant differences were found between men
and women in the identity dimension except for the pain item (see Table 3). Several statistically significant differences were observed in the other dimensions (Table 4), showing that women were more pessimistic than men about the disease’s timeline, its consequences, and their ability to control it. No significant differences were found between men and women regarding their beliefs about the causes of osteoporosis. Finally, compared to men, women reported higher levels of anxiety evoked by the disease.
Discussion The current study had two main objectives: to evaluate the cognitive and emotional illness representations of osteoporotic patients and to assess gender differences in osteoporosis illness representations. We found that participants characterized osteoporosis as a chronic disease, with a limited number of symptoms. Additionally, they perceived their disease as having only a mild impact on their lives and as being controllable. Finally, they reported only moderate levels of anxiety associated with the disease. These findings are congruent with our participants’ clinical status, mainly because only half of the sample was characterized by a history of fractures and this corroborates the common perception of osteoporosis as a ‘‘silent’’ disease [21] before the occurrence of a fracture. Moreover, according to Leventhal et al. [5] who stated that the personal experience patients have with their disease influences the way they perceive their status, we found statistically significant associations between clinical variables (such as the amount of time elapsed since the most recent fracture, sustaining fewer factures, and having better bone density score at the lumbar spine), and the relatively optimistic illness perceptions reported by the participants in the current study. Although encouraging, these findings might have deleterious effects on health behaviors [22,23]. Therefore, in order to promote participation in health behaviors, health professionals should ensure that healthy persons and osteoporotic patients are aware of the clinical nature of osteoporosis, and most importantly of the impact the disease might have on life when fractures occur. With regard to the
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Original Articles participants’ sense of control, as reflected in the control/cure dimension, we found that both men and women believed osteoporosis to be controllable. This is an encouraging finding especially since studies showed that greater sense of control is positively associated with participation in health behaviors [24,25]. Regarding the relationships between the different dimensions in the SRM, our findings support the existence of underlying cognitive structures reported in studies assessing other diseases [6–8,26]. Indeed, an increased number of symptoms reported in the identity dimension was associated with beliefs that the disease was less controllable and had more severe consequences on life. Furthermore, strong identity and pessimistic cognitions about the disease’s timeline and consequences were associated with more negative emotional representations. Leventhal et al. [5] asserted that the different dimensions of the SRM are independent but also inter-correlated. The magnitude of the correlations that were found in our study provides a theoretical support for this assertion. We demonstrated for the first time that the SRM serves as an appropriate theoretical framework for investigating illness representations of osteoporosis. Practically, since studies in other chronic diseases [8,25,26] have found that illness representations were associated with participation in health behaviors, future studies among osteoporotic patients are encouraged to incorporate the SRM in their inquiry. Interestingly, we found that there was no statistically significant correlation between the timeline and identity dimensions. A possible explanation for this lack of correlation was offered by Haggar & Orbell [25] who argued that a positive correlation between the timeline and identity dimensions depends on the belief that the disease also carries significant implications on patients’ lives. As stated above, our participants perceived the disease as having only a mild impact on their lives and as being characterized by having a few symptoms. These perceptions might have affected the relationship (or lack of relationship) between symptoms and timeline dimensions. As the current study is the first to assess illness representations regarding osteoporosis, future studies are needed to support our findings. Regarding the second aim of our study (i.e., examining gender differences on illness
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representations about osteoporosis) we found that, compared to women, osteoporotic men believed osteoporosis was more controllable, had a lesser impact on their lives, was characterized by a less chronic timeline, and was associated with less anxiety. These findings may be associated with gender socialization processes which encourage men to present a stereotypical picture of being tough and selfreliant [27,28] and women to report greater anxiety levels than men [28]. Furthermore, although there were no statistically significant differences between women and men regarding most of the identity dimension items, a statistically significant difference was found in the pain item. Possible explanations for this finding are the higher sensitivity of women to body sensations and their lower pain threshold [29]. Alternatively, the difference might stem from males responsiveness to gender stereotypes presenting them as having a greater ability to endure pain [27,28]. However, gender differences might not be based only on gender stereotypes’ responsiveness or social legitimacy. They might also be explained by differences in clinical status. Indeed, in our sample of osteoporotic patients, women were diagnosed at a younger age than men. Moreover, significant positive correlations were found between the time elapsed since the initial diagnosis of the osteoporosis and the timeline and consequences dimensions. In other words, in osteoporotic disease, timeline and consequences dimensions are not based on male or female images alone, but also on gender-related clinical variables. Three main limitations regarding our study should be noted. The use of a convenience sample does not allow us to generalize the results nor does it provide an accurate representation of all osteoporotic patients in Israel. The cross-sectional nature of the current study requires caution when interpreting the relationships in our findings. Lastly, we acknowledge the existence of the IPQ-r [7], a newer version of the IPQ [18] which may provide a more comprehensive understanding of illness representations. Unfortunately, a validated Hebrew version was not available at the study start. Despite these limitations, the current study has several important contributions. We show for the first time that, similar to other diseases, osteoporotic patients tend to report a logical
Original Articles and emotional structure to their illness, stressing the appropriateness of the SRM for this disease as well. These findings may help health professionals in their efforts to promote patients’ participation in health behaviors by planning intervention programs suited to
their illness perceptions. Our findings expand the limited body of knowledge available regarding gender impact on illness representations. This stresses the need to consider using intervention programs especially tailored to the needs of the different genders.
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Keywords Osteoporosis Illness perceptions Gender differences
Offer Emanuel Edelstein, PhD School of Social Work, University of Haifa, Haifa, Israel, 31950 Perla Werner, PhD Department of Gerontology, University of Haifa, Haifa, Israel, 31950 Rivka Dresner-Pollak, MD Endocrinology and Metabolism Service, Department of Medicine, Hadassah-Hebrew University Medical Center, Jerusalem, Israel, 91120 Karen Tordjman, MD Institute of Endocrinology, Metabolism and Hypertension. Tel Aviv Sourasky Medical Center, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, 69978 Anat Jaffe, MD Endocrinology and Diabetes Mellitus unit, Hille Yaffe Medical Center, Hadera, Israel 38100 Yoel Toledano, MD Endocrinology and Diabetes Mellitus unit, Hille Yaffe Medical Center, Hadera, Israel 38100 Iris Vered, MD Institute of Endocrinology, Chaim Sheba Medical Center, Tel Hashomer, Israel. Sackler faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, 69978 E-mail: [email protected]
Online 5 July 2012
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Illness perceptions among osteoporotic men and women: correlates and gender differences Offer Emanuel Edelstein, Perla Werner, Rivka Dresner-Pollak, Karen Tordjman, Anat Jaffe, Yoel Toledano and Iris Vered Abstract Background: Although osteoporosis is a major public concern, little research attention has been paid to evaluating the manner in which osteoporotic patients perceive their illness. The aim of the current study was to examine osteoporotic patients’ cognitive and emotional illness representations and to see, specifically, if any differences could be correlated with gender. Methods: A convenience sample of 102 women and 100 men (mean age 66 years in both groups) who were diagnosed with osteoporosis, and who were attending bone and mineral clinics at four major medical centers in Israel, participated in the study. Participants were interviewed face-to-face at the clinics or in their homes, using an adapted version of the Illness Perceptions Questionnaire (IPQ). Emotional illness representations were assessed using the state anxiety subscale from the State-Trait Personality Inventory (SPTI). Results: Participants perceived osteoporosis as a chronic but controllable disease. They perceived the disease as having few symptoms and mild consequences on their lives. Conclusions: Osteoporotic patients maintained a logical cognitive and emotional structure of their illness. Regarding gender differences, findings showed that women were more pessimistic than men regarding most of the illness representations’ dimensions. Gender differences in illness representations suggest women and men may benefit from different intervention programs, tailored according to their unique perceptions. WPMH GmbH. Published by Elsevier Ireland Ltd.
Introduction Osteoporosis is a skeletal disorder characterized by compromised bone strength, predisposing a person to an increased risk of fractures [1]. Until the occurrence of the first fracture, osteoporosis presents no challenges to quality of life. Thus, it is considered to be a ‘‘silent disease’’, and many patients are treated only after the first fracture. Since osteoporosis is common among postmenopausal women, it is frequently regarded as a ‘‘Caucasian women’s disease’’. However, the disease is also prevalent among men. While it has been reported that approximately 8 million women
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in the United States have osteoporosis, as many as 2 million men also suffer from the disease [2]. Furthermore, the life-time risk for an osteoporotic fracture among women has been estimated at 53% and among men at 21% [3]. More importantly, it has been shown that, compared to women, men have a higher mortality rate from hip fractures and a lower frequency of screening and treatment [4]. These figures stress the need to understand the consequences of this disease in both genders. In the last three decades, research has emphasized the importance of exploring health cognitions in an effort to understand patients’ coping process with their illness and
WPMH GmbH. Published by Elsevier Ireland Ltd.
Original Articles engagement in health behaviors. According to the Self Regulation Model (SRM) [5] patients use five different cognitive dimensions (called illness representations) in order to understand their condition. These dimensions are: Identity (the label the patients give to their illness and the way they perceive its symptoms); Timeline (the perceived duration of the illness); Consequences (the perceived impact of the illness); Cure/control (the perceived ability to cure or control the illness); and Causes (the beliefs about the factors responsible for causing the disease). In addition to the construction of cognitive representations the model assumes that the patients’ condition also evokes emotional representations such as anger, depression, anxiety, fear and nervousness [5]. Studies assessing illness representations in a variety of diseases, such as Addison’s disease, chronic fatigue syndrome, heart conditions and chronic renal failure [6–9], have shown that there is a logical pattern of correlations between these dimensions. For example, strong illness identity is usually correlated with a lower sense of control and with pessimistic cognitions about the duration and the consequences that the illness carries. Moreover, strong illness identity and negative beliefs about the illness duration and consequences were also found to be correlated with negative emotional illness representations. Although osteoporosis is a major public concern, to the best of our knowledge no study has evaluated the SRM among osteoporotic patients and only one study has partially assessed the model in patients who experienced traumatic hip fractures [10]. That study showed that patients believed they had only limited ability to control the situation and that hip fractures had a mild impact on their lives. Despite its importance, that study has two major limitations for the assessment of illness representations regarding osteoporosis: the participants were not osteoporotic and only two of the five dimensions comprising the SRM were estimated. Thus, the first aim of the current study was to assess illness representations in osteoporotic patients including the relationships between the different dimensions. Our second aim was to assess whether cognitive and emotional representations vary by the gender of the patient. Since the SRM hypothesizes that illness representations
might be affected directly and indirectly by the social context [11], it is reasonable to assume that gender plays a role in their construction. A limited number of studies have examined the associations between gender and illness representations, using the SRM as a theoretical framework [12–17], and they have not reached consistent conclusions regarding the impact of gender on all the dimensions of illness representations. For instance, some studies [16,17] found that, compared to men, women tended to report more symptoms and a lesser feeling of control. However, for the timeline and consequences dimensions some studies found that men reported their disease carried more consequences on their lives [14] or had a longer timeline [7], while other studies showed exactly the opposite [16,17]. Thus, the second aim of the present study was to expand this body of knowledge by examining gender differences in illness representations.
Methods Participants A convenience sample of 202 participants (102 women and 100 men), who were attending bone and mineral clinics at four major medical centers in Israel, were assessed between January 2006 and September 2007. To be included in the study, patients had to be diagnosed as having osteoporosis according to the World Health Organization definition (i.e., density scores of 2.5 standard deviations or more below the mean in a young reference population) [1], with or without related fractures and to speak Hebrew. Patients who were suffering from the following conditions were excluded from the study: bone diseases other than osteoporosis; cognitive or psychiatric disorders; a disease that severely affected quality of life such as unbalanced diabetes, lung or heart disease and cancer. The socio-demographic and health characteristics of the sample are presented in Tables 1 and 2. The participants’ mean age in both genders was about 66 years and their level of education was relatively high. Compared to men, higher percentages of widows or divorce´es and participants with low income were found among women. Only half of the participants had an osteoporotic fracture; the mean age at
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Original Articles Table 1 Socio-demographic characteristics Total sample (n = 202) Women (n = 102) Men (n = 100) Sig.y Mean age (S.D.) 66.5 (10.1) Mean education years (S.D.) 15 (3.3) Marital status (% / n) Married 71.8/145 Widowed 12.9/26 Divorced 9.9/20 Single 5.4/11 Income (% / n) 4000–5999 NIS 22.3/45 6000 + NIS 72.7/147 Refused 5/10
66.5 (9.5) 15 (3)
66.8 (10.7) 15.6 (3.6)
n.s. n.s.
62.7/64 18.6/19 14.7/15 4/4
81/81 7/7 5/5 7/7
x2(3) = 13.3, P<0.001
29.4/30 62.8/64 7.8/8
15/15 83/83 2/2
x2(3) = 24.1, P<0.01
Sig., significance; S.D., standard deviation; n.s., not significant; NIS, new Israeli shekels. y Differences between men and women only.
occurrence of the first fracture was around 60 years in both groups, and the mean time since the occurrence of the most recent fracture was 6.6 years. Compared to men, women had lower bone density scores in the lumbar spine, and had been diagnosed as having osteoporosis at a younger age. However, no statistically significant differences were found between the groups in the number of fractures they had sustained or the time since occurrence of the most recent fracture.
Measures The measures listed below were used. Illness representations According to the SRM [5], two types of illness representations were assessed – cognitive and emotional.
(1) Cognitive illness representations were measured using the Illness Perception Questionnaire [18], which was adapted to measure cognitive illness representations regarding osteoporosis. Thirty five items were assessed tapping five dimensions: identity (6 items), causes (13 items), timeline (3 items), consequences (7 items) and cure/control (6 items). The items for four dimensions (causes, duration, consequences, cure/control) were rated on a 5point Likert-type scale ranging from 1 = ‘‘strongly disagree’’ to 5 = ‘‘strongly agree’’. An overall subscale was created for each dimension by averaging the items. The internal consistency of the timeline, consequences and cure/control subscales was good to excellent (Cronbach’s a = 0.91, 0.81, and 0.77, respectively). The identity subscale included six osteoporosis-related
Table 2 Health characteristics
Mean (S.D.) number of years elapsed since initial diagnosis Mean (S.D.) number of fractures Mean (S.D.) age at occurrence of the first fracture Mean (S.D.) t-scores in lumber spine Mean (S.D.) t-scores in femoral neck Had an osteoporotic fracture (% / n) Mean number of fractures (S.D.) Mean years elapsed since the occurrence of the most recent fracture (S.D.)z Sig., significance; S.D., standard deviation; n.s., not significant; y Differences between men and women only. z Figures were calculated only for patients with fractures.
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Total sample
Women
Men
(n = 202)
(n = 102)
(n = 100)
7.4 (5.6) 1.1 (1.4) 58.8 (10.9) 2.4 (0.9) 2.3 (0.8) 51.5/104 1.2 (1.4) 6.6 (5.9)
9.0 (6.2) 1.3 (1.4) 60.1 (10.6) 2.6 (0.9) 2.4 (0.8) 55.8/57 1.3 (1.3) 6.0 (5.5)
5.8 (4.5) 1.0 (1.4) 57.1 (11.8) 2.3 (0.9) 2.3 (0.9) 47/47 1.1 (1.4) 7.2 (6.5)
Sig.y t(200) = -4.2, P<0.01 n.s. n.s. t(200) = 2.4, P<0.05 n.s. n.s. n.s. n.s.
Original Articles symptoms: pain, shortness of breath, sleep disturbances, weakness, loss of height, back bending. Each item was rated on a scale ranging from 0 = ‘‘not at all’’ to 4 = ‘‘all the time’’. For analysis purposes, all items receiving an answer of 1 and above were coded as 1 and a total score for this subscale was obtained by summing the answers to each item. Cronbach’s a for this subscale was 0.68. Finally, for the causes dimension, in accordance with the recommendation of Weinman et al. [18] we conducted a factor analysis including the 13 items in the scale using varimax rotation. Five factors with Eigen values of 1 and over emerged from this analysis, and subsequently five indices were created by averaging the items in each factor: (i) The others’ responsibility index included three items stating that the cause of the disease is other people’s responsibility, past malpractice, and other diseases (Cronbach a = 0.68). (ii) The life style index included three items relating to diet, lack of exercise and general behavior (Cronbach a = 0.65). (iii) The Mental state and mood index included two items stating that the causes of the disease were bad mood or high level of mental pressure (Pearson’s correlation = 0.75). (iv) The Genetics or chance index included two items reflecting genetics or chance responsibility of osteoporosis (Pearson’s correlation = 0.35). (v) The External causes index included three items related to air pollution, viral disease and divine supervision. Internal consistency of this index was low (Cronbach alpha = 0.50) and therefore this factor was not included in further analyses. (2) Emotional illness representations were measured using the 10 items from the Hebrew version of the State Trait inventory [19] of the State–Trait Personality Inventory (STPI) [20] which measure state anxiety. These items were adapted to measure state anxiety evoked by osteoporosis. For example, ‘‘I am worried about osteoporotic fractures’’; ‘‘I am getting anxious when thinking about osteoporosis’’. Each item was rated on a 4-point Likert-type scale ranging from 1 = ‘‘not at all’’ to 4 = ‘‘very much’’. An overall index was created by summing all the items. This subscale showed excellent internal consistency in the present study (Cronbach’s a = 0.91).
Demographic and health data These included information regarding gender, age, education level, income, number of children and marital status. Data regarding the number of fractures the participants had, bone density scan scores and time since the last fracture were collected from the patients’ medical records. Procedure A computerized search of the medical records was performed by the physicians at each clinic in order to locate men and women who were treated for osteoporosis during the 2 years preceding the study, resulting in 162 men and 165 women. A total of 46 men and 50 women were excluded as they also had a diagnosis for other bone diseases, or for cognitive or psychiatric disorders besides having osteoporosis. The potentially eligible 116 men and 115 women were approached by the physician and presented with the aims of the study; 16 men and 13 women refused to participate for personal reasons, resulting in a final sample of 202 participants (87% response rate). Once the participants signed informed consent forms, they were contacted by the researcher and were interviewed face-to-face using a structured questionnaire. Interviews took place at the clinics (102 women and 77 men) or in participants’ homes (23 men). Ethical considerations The research protocol was approved by the Helsinki committee of each medical center. All participants signed informed consent forms. To protect the participants’ privacy, the data obtained from their medical records and interviews were coded anonymously to a password protected file. Statistical analysis The statistical analysis included descriptive statistics (means, standard deviations, percentages) to describe the sample and the main study variables (cognitive and emotional representations and background data). Additionally, Pearson’s correlations were calculated to assess correlations between the illness representations’ dimensions. Finally, in order to assess gender differences, t and x2 tests were performed according to the type of the variable.
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Original Articles Table 3 Identity subscale and gender based differences Identity
Total sample
Men
Women
t
Possible
dimension
(n = 202)
(n = 100)
(n = 102)
(d.f. = 200)
Pain Shortness of breath Sleep disturbances Weakness Loss of height Back bending
1.9 1.0 1.2 1.3 2.2 1.8
1.7 1.0 1.2 1.4 2.1 1.7
2.1 1.0 1.2 1.2 2.3 1.9
2.6* n.s. n.s. n.s. n.s. n.s.
(1.0) (0.2) (0.5) (07) (1.0) (1.0)
(0.9) (0.2) (0.7) (0.8) (1.0) (1.0)
(1.1) (0.3) (0.5) (0.7) (1.0) (1.0)
y
scale range 1–4 1–4 1–4 1–4 1–4 1–4
d.f., degrees of freedom; n.s., not significant. y Differences between men and women only. * P<0.001.
Correlations between cognitive representation indexes
Results Cognitive illness representations As shown in Table 3, the participants identified very few symptoms associated with the disease. The most frequent symptoms were: loss of height and back bending. As shown in Table 4, participants perceived osteoporosis as a chronic disease but also as a controllable one. In addition, osteoporosis was perceived as having only mild consequences on life. Finally, participants tended to believe that osteoporosis was caused by genetics or chance.
Several statistically significant correlations were found between the cognitive representations indices. Participants who identified more symptoms, reported greater consequences (r = 0.55, P <0.01) and less sense of control (r = -0.18, P <0.01). Participants who reported greater consequences also had a weaker sense of control (r = -0.28, P<0.01) and tended to believe their disease was caused by their life style (r = 0.19, P <0.01). No statistically significant correlations were found between timeline and all other illness representations.
Emotional illness representations:
Correlations between cognitive and emotional representations:
As shown in Table 4, participants reported only mild levels of anxiety.
Participants who reported on higher levels of anxiety, also tended to identify more
Table 4 Cognitive/emotional representations indexes and gender based differences Total sample (n = 202) Cognitive representations Identity Timeline Consequences Cure/control Causes others’ responsibility Life style Mental state and mood Genetics or chance Emotional representations State anxiety
2.1 4.4 2.5 3.8 1.9 2.5 1.3 3.4
(1.3) (0.9) (0.9) (0.7) (1.1) (1.2) (0.6) (1.3)
21.1 (6.3)
Men
Women
(n = 100) 1.9 4.2 2.3 4.0 2.0 2.4 1.3 3.2
(1.4) (1.0) (0.8) (0.7) (1.2) (1.1) (0.6) (1.3)
19.2 (5.3)
d.f., degrees of freedom; n.s., not significant. y Differences between men and women only.*P<0.05; **P<0.001.
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(n = 102) 2.2 4.5 2.7 3.7 1.9 2.6 1.4 3.4
t
Possible y
(d.f. = 200)
range
(1.2) (0.8) (1.0) (0.8) (1.1) (1.2) (0.6) (1.4)
n.s. 2.2* 3.3** 2.4* n.s n.s n.s n.s
0–6 1–5 1–5 1–5 1–5 1–5 1–5 1–5
23.0 (6.6)
4.5**
10–40
Original Articles symptoms (r = 0.35, P <0.01), believed the disease was less controllable (r = -0.28, P<0.01) and had severe consequences on their lives (r = 0.47, P <0.01). No statistically significant correlations were found between anxiety level and the timeline or the causes dimensions.
Correlations between participants’ socio-demographic and health characteristics and illness representations Several statistically significant correlations were found between participants’ socio-demographic and health characteristics and the illness representations. The participants’ level of education was positively correlated with the belief that the disease was more chronic (r = 0.20, P <0.01) and was negatively correlated with the consequences dimension and level of state anxiety (r = -0.14 and -0.14, P<0.05, respectively). Having a greater number of fractures was positively correlated with more pessimistic perceptions about the disease’s consequences, symptoms and related state anxiety (r = 0.41, 0.38, and 0.29, P<0.01, respectively) and was negatively correlated with the belief that it was controllable (r = -0.28, P<0.01). Higher bone density score at the lumbar spine was positively correlated with the belief that the disease was more controllable (r = 0.27, P <0.01) and was negatively correlated with consequences and symptoms identifications (r = -0.24, and -0.19, P<0.01, respectively). The length of time that had elapsed since the participants were initially diagnosed as having osteoporosis was positively correlated with more pessimistic perceptions about the disease’s timeline, consequences and symptoms (r = 0.28, P<0.01; r = 0.14 and 0.14, P<0.05, respectively). Finally, the length of time elapsed since the occurrence of the most recent fracture was positively correlated with the belief that osteoporosis was more controllable (r = 0.26, P<0.01). No statistically significant associations were found between participants’ age and illness representations dimensions.
Gender differences in cognitive and emotional representations Although only a few gender-related differences were found, interesting differences emerged in some of the dimensions. No statistically significant differences were found between men
and women in the identity dimension except for the pain item (see Table 3). Several statistically significant differences were observed in the other dimensions (Table 4), showing that women were more pessimistic than men about the disease’s timeline, its consequences, and their ability to control it. No significant differences were found between men and women regarding their beliefs about the causes of osteoporosis. Finally, compared to men, women reported higher levels of anxiety evoked by the disease.
Discussion The current study had two main objectives: to evaluate the cognitive and emotional illness representations of osteoporotic patients and to assess gender differences in osteoporosis illness representations. We found that participants characterized osteoporosis as a chronic disease, with a limited number of symptoms. Additionally, they perceived their disease as having only a mild impact on their lives and as being controllable. Finally, they reported only moderate levels of anxiety associated with the disease. These findings are congruent with our participants’ clinical status, mainly because only half of the sample was characterized by a history of fractures and this corroborates the common perception of osteoporosis as a ‘‘silent’’ disease [21] before the occurrence of a fracture. Moreover, according to Leventhal et al. [5] who stated that the personal experience patients have with their disease influences the way they perceive their status, we found statistically significant associations between clinical variables (such as the amount of time elapsed since the most recent fracture, sustaining fewer factures, and having better bone density score at the lumbar spine), and the relatively optimistic illness perceptions reported by the participants in the current study. Although encouraging, these findings might have deleterious effects on health behaviors [22,23]. Therefore, in order to promote participation in health behaviors, health professionals should ensure that healthy persons and osteoporotic patients are aware of the clinical nature of osteoporosis, and most importantly of the impact the disease might have on life when fractures occur. With regard to the
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Original Articles participants’ sense of control, as reflected in the control/cure dimension, we found that both men and women believed osteoporosis to be controllable. This is an encouraging finding especially since studies showed that greater sense of control is positively associated with participation in health behaviors [24,25]. Regarding the relationships between the different dimensions in the SRM, our findings support the existence of underlying cognitive structures reported in studies assessing other diseases [6–8,26]. Indeed, an increased number of symptoms reported in the identity dimension was associated with beliefs that the disease was less controllable and had more severe consequences on life. Furthermore, strong identity and pessimistic cognitions about the disease’s timeline and consequences were associated with more negative emotional representations. Leventhal et al. [5] asserted that the different dimensions of the SRM are independent but also inter-correlated. The magnitude of the correlations that were found in our study provides a theoretical support for this assertion. We demonstrated for the first time that the SRM serves as an appropriate theoretical framework for investigating illness representations of osteoporosis. Practically, since studies in other chronic diseases [8,25,26] have found that illness representations were associated with participation in health behaviors, future studies among osteoporotic patients are encouraged to incorporate the SRM in their inquiry. Interestingly, we found that there was no statistically significant correlation between the timeline and identity dimensions. A possible explanation for this lack of correlation was offered by Haggar & Orbell [25] who argued that a positive correlation between the timeline and identity dimensions depends on the belief that the disease also carries significant implications on patients’ lives. As stated above, our participants perceived the disease as having only a mild impact on their lives and as being characterized by having a few symptoms. These perceptions might have affected the relationship (or lack of relationship) between symptoms and timeline dimensions. As the current study is the first to assess illness representations regarding osteoporosis, future studies are needed to support our findings. Regarding the second aim of our study (i.e., examining gender differences on illness
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representations about osteoporosis) we found that, compared to women, osteoporotic men believed osteoporosis was more controllable, had a lesser impact on their lives, was characterized by a less chronic timeline, and was associated with less anxiety. These findings may be associated with gender socialization processes which encourage men to present a stereotypical picture of being tough and selfreliant [27,28] and women to report greater anxiety levels than men [28]. Furthermore, although there were no statistically significant differences between women and men regarding most of the identity dimension items, a statistically significant difference was found in the pain item. Possible explanations for this finding are the higher sensitivity of women to body sensations and their lower pain threshold [29]. Alternatively, the difference might stem from males responsiveness to gender stereotypes presenting them as having a greater ability to endure pain [27,28]. However, gender differences might not be based only on gender stereotypes’ responsiveness or social legitimacy. They might also be explained by differences in clinical status. Indeed, in our sample of osteoporotic patients, women were diagnosed at a younger age than men. Moreover, significant positive correlations were found between the time elapsed since the initial diagnosis of the osteoporosis and the timeline and consequences dimensions. In other words, in osteoporotic disease, timeline and consequences dimensions are not based on male or female images alone, but also on gender-related clinical variables. Three main limitations regarding our study should be noted. The use of a convenience sample does not allow us to generalize the results nor does it provide an accurate representation of all osteoporotic patients in Israel. The cross-sectional nature of the current study requires caution when interpreting the relationships in our findings. Lastly, we acknowledge the existence of the IPQ-r [7], a newer version of the IPQ [18] which may provide a more comprehensive understanding of illness representations. Unfortunately, a validated Hebrew version was not available at the study start. Despite these limitations, the current study has several important contributions. We show for the first time that, similar to other diseases, osteoporotic patients tend to report a logical
Original Articles and emotional structure to their illness, stressing the appropriateness of the SRM for this disease as well. These findings may help health professionals in their efforts to promote patients’ participation in health behaviors by planning intervention programs suited to
their illness perceptions. Our findings expand the limited body of knowledge available regarding gender impact on illness representations. This stresses the need to consider using intervention programs especially tailored to the needs of the different genders.
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