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Psychosomatic Medicine 62:318-325 (2000)
© 2000 American Psychosomatic Society

ORIGINAL ARTICLES

Illness Fears in the General Population

Russell Noyes, Jr., MD, Arthur J. Hartz, MD, PhD, Caroline C. Doebbeling, MD, MS, Richard W. Malis, MD, Rachel L. Happel, BSN, Lisa A. Werner, BA and Steven J. Yagla, MA

From the Departments of Psychiatry (C.C.D., R.W.M., R.N., R.L.H.), Family Practice (A.J.H.), and Internal Medicine (C.C.D., R.W.M.), University of Iowa College of Medicine, Iowa City, IA.

Address reprint requests to: Dr. Russell Noyes, Jr., Psychiatry Research, Medical Education Building, Iowa City, IA 52242-1000. Email: rnoyes{at}blue.weeg.uiowa.edu


   ABSTRACT
TOP
 ABSTRACT
INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
OBJECTIVES: Because relatively little is known about illness fears, we sought to estimate the prevalence, risk factors, and morbidity associated with such fears in the community.

METHODS: We conducted a brief telephone survey of persons aged 40 to 65 years from randomly selected households in the Johnson County, Iowa, area. Respondents were asked whether a series of illness and medical care items made them no more nervous, somewhat more nervous, or much more nervous than other people. Those who reported more discomfort were asked to what extent this interfered with medical care or caused impairment or distress. Information about demographic and health characteristics was also obtained.

RESULTS: Five hundred persons, 62% of those contacted, responded to the survey. A factor analysis revealed four fear dimensions: illness/injury, medical care, blood/needle, and aging/death. Five percent of respondents reported much more nervousness in relation to at least four of six illness/injury items, 4% indicated that such fears interfered with their medical care, and 5% reported some negative effect on their life. Similarly, 5% of respondents reported much more nervousness in relation to at least two of four medical care items. Illness/injury fears were somewhat more common in persons with lower income and education and in those with medical conditions.

CONCLUSIONS: This survey shows that fears of illness and medical care are common in the general population and indicates that lower socioeconomic status and experience with illness are associated with these fears. The findings also suggest that interference with care occurs among those with the strongest fears.

Key Words: illness fears • phobias • epidemiology • prevalence • risk factors • general population

Abbreviations: DSM-IV = Diagnostic and Statistical Manual of MentalDisorders, 4th ed.


   INTRODUCTION
TOP
 ABSTRACT
 INTRODUCTION
METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Marks (1) classified abnormal illness fears among the phobias of internal stimuli. He noted that they are intense fears of specific conditions, such as cancer or heart disease, and distinguished them from hypochondriasis, in which diffuse fear is focused on multiple symptoms rather than a particular illness (2). Although illness fears and phobias have long been recognized, relatively little is known about the frequency with which they occur or their significance. Agras et al. (3) reported that fears of illness, like those of injury and death, are common in the general population. In Burlington, Vermont, they found some degree of illness fear in 18.2% of the surveyed population and illness/injury phobias in 3.1%. They reported that persons with such phobias had sometimes sought help from a physician to reduce their fear of medical procedures but that a small proportion had avoided medical care, thereby jeopardizing their health.

It is unclear whether illness/injury fears and phobias are distinct from a more general phobic syndrome or from subtypes of the specific phobias (4, 5). Most factor analytic studies, based on Fear Survey Schedules, have identified a bodily harm dimension (6). Thus, in their review of such studies, Arrindell et al. (7, 8) identified four relatively consistent factors: fears of death, injury, illness, blood, and surgical procedures; animal fears; interpersonal fears; and agoraphobic fears. According to Oei et al. (9), fear of bodily harm is higher in women and is highly correlated with animal fears. Within the bodily harm dimension, evidence has accumulated for a distinct subtype, blood-injection-injury phobia, based on a unique vasovagal response to phobic stimuli (10, 11). This subtype is included in DSM-IV (12). Its occurrence in the general population is not precisely known, but Costello (13) estimated the prevalence of mutilation phobia (ie, injections, hospitals, doctors, and blood) at 4.9% among the women of Calgary, Canada, and Fredrickson et al. (14) found the same phobia (ie, injections, dentists, and injuries) among 3.2% of women and 2.7% of men in Stockholm, Sweden. Although there are reports of patients avoiding medical care because of blood-needle-injury fear, the extent of such avoidance has not been determined (15, 16).

It is known that some persons delay seeking medical attention and that this delay affects the outcome of their care (17). This has been most widely documented in cancer patients, nearly one-third of whom put off seeing a physician for 3 months or more after warning signs appear (18). The reasons for such delay seem to be many but include excessive fear of illness (19, 20). For instance, MacFarlane and Sony (21) showed that anxiety in women who had discovered breast masses was associated with delay in undergoing biopsies. It is clear that phobic disorders influence the seeking of medical care. For instance, the use of general medical services is higher among persons with agoraphobia than among persons with specific phobias; the increased use of services by agoraphobics resembles that of persons with other anxiety and depressive disorders (22). Some phobic individuals may seek care sooner or more often, whereas others may delay or avoid care altogether.

Anxiety and fear may also affect health and medical care by influencing health promotion behaviors and disease detection procedures. The literature indicates that patients who have a monitoring coping style (ie, seek information about threats) develop greater anxiety in response to medical procedures, show greater adherence to disease detection procedures, and visit primary care physicians for less severe health problems than do patients with a blunting coping style (ie, avoid threat-relevant information) (23–25). Monitoring individuals also have more anxiety about illness and more fear of blood/injury (26). Thus, there is evidence that fears and phobias influence behavior with respect to medical care. The present study was designed to determine the prevalence of illness-related fears in the general population and to learn what the significance of such fears may be.


   METHODS
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
RESULTS
 DISCUSSION
 REFERENCES
 
This community survey of illness fears involved 500 residents of Johnson County, Iowa, and nearby counties that make up the catchment area of the University of Iowa Family Practice. Persons within this area were sampled so that the distribution of zip codes would be the same as that for patients in the practice. This population was chosen for its comparability to patients enrolled in a practice where future research is planned; it was not chosen for the primary purpose of obtaining prevalence estimates. Also, subjects aged 40 to 65 years were chosen so that the influence of fears on medical care, including health promotion behaviors and disease detection procedures, could be examined.

A telephone survey was conducted by the Iowa Social Science Institute using random-digit dialing of households in the defined area. Randomly generated telephone numbers within the specified counties were obtained from Survey Sampling, Inc. The sample was prepared by first identifying working exchanges (ie, first three digits) in these counties and then randomly generating the last four digits. These numbers were then matched against census data to remove problem numbers (eg, business numbers). An interview of about 10 minutes was conducted by trained lay interviewers, who used a computer-assisted telephone interview system under the supervision of institute staff. When contacting households, interviewers asked to speak with the individual residing there between the ages of 40 and 65 years who had had the most recent birthday. They then identified themselves as conducting interviews on behalf of the University of Iowa College of Medicine to learn about the attitudes of Iowans toward illness and medical care. No substitutions were made within the household if the eligible respondent refused. If that respondent was not home or was not available, an effort was made to call back at an acceptable time. A total of 10 callbacks were made before a subject was assigned to the unreachable or not contacted categories.

The interview used in this survey was developed by the authors. It was patterned after an interview dealing with social anxiety and phobias used in a community survey by Stein et al. (27). The first series of questions dealt with fears of illness or injury. These were introduced by the following statements: "Some people are bothered by thoughts about illness or injury that are unrelated to the state of their health. As I read some possibilities to you, tell me how uncomfortable or nervous each one makes you. Tell me if it makes you much more nervous or uncomfortable than other people, somewhat more nervous than other people, or no more than other people. The first is the thought of becoming seriously ill." We included health-related events or circumstances that are mentioned in the literature on illness phobia and are found on questionnaires designed to elicit such fears (2, 28–30).

If a respondent answered "no more than other people" to all eight illness-related items, the interviewer then asked a series of medical care items. However, if the respondent answered "much more" or "somewhat more," the interviewer asked, "Which of these thoughts or possibilities makes you the most uncomfortable or nervous?" Having determined which was the most distressing, the interviewer then asked how that fear had affected the person’s medical care, health, or life. Each respondent was asked to what extent the fear had "caused you to seek medical attention sooner or more often"; "caused you to delay or avoid seeking medical attention"; "interfered with any medical care you could have received"; "had any negative effect on your work, relationships, or other aspects of your life"; or "bothered you personally". The response categories were "not at all," "a little bit," "a moderate amount," and "a great deal."

A second set of questions dealt with medical care items. These were introduced with the following statements: "Some people are bothered by contact with health professionals or medical procedures. Tell me how uncomfortable you would be with each of the following. Would you be much more nervous or uncomfortable, somewhat more nervous, or no more nervous than other people? The first is going to see the doctor." As with the first series of questions, the interviewer determined the most distressing and, for that item, the affect on medical care, health, or life. Follow-up questions were the same as those used for the illness-related items, except that "caused you to seek medical care sooner or more often" was omitted.

Subjects were next asked whether they had adhered to several health promotion behaviors and disease detection procedures. They were specifically asked, "Do you eat what most people consider a healthy diet?" "Exercise on a regular basis?" "Have your blood pressure checked regularly?" and "Obtain Pap smears on an annual basis [women]?" Finally, subjects were asked about demographic characteristics, including age, gender, race, education, income, and health status (0 = poor, 1 = fair, 2 = good, and 3 = excellent). Subjects were also asked if they had been told by a doctor that they had any of seven medical conditions. These included high blood pressure, heart disease, emphysema or other severe lung disease, diabetes, cancer, stroke or other severe neurological condition, and arthritis.

To examine relationships between fears, we conducted a factor analysis with varimax rotation. Since each of the 15 items correlated at least 0.35 with one or more other items, all were retained for the analysis. Scores for the resulting factors were calculated for each subject by summing the scores (0 = no more, 1 = somewhat more, and 2 = much more) for individual fears belonging to the factors.

We examined relationships between fear factor scores and continuous demographic variables and health status using Pearson’s correlation coefficient. We also examined differences in factor scores between men and women, nonwhite and white respondents, and respondents with and without medical conditions using Student’s t test. In addition, we compared those with the strongest illness/injury fears (three or more fears rated as causing much more distress than experienced by others) to the remaining respondents on adherence to health promotion behaviors and disease detection procedures using {chi}2 tests. In the same manner, we compared those with the strongest medical care fears (two or more fears causing much more distress than experienced by others) to the remaining subjects on adherence to these same behaviors and procedures.


   RESULTS
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
DISCUSSION
 REFERENCES
 
Within a sample frame of 3000, 1144 persons were ineligible (eg, because of age or gender), 798 had problem telephone numbers (eg, business telephones or numbers not in service), 256 were unreachable, 188 declined to participate, and 114 could not be contacted (ie, initial contact with household was not completed). The final sample was composed of 500 subjects. When those with problem telephone numbers and ineligible subjects were subtracted, a response rate of 62.3% was obtained. Respondents included 263 women and 237 men with a mean age of 51.2 ± 7.9 years; 94.8% were white. Their median educational attainment was 14 years, and their median household income was approximately $40,000 annually.

The factor analysis identified four groupings of interrelated items that explained 60.3% of the variance. Table 1 shows the factors together with loadings for individual items. These factors seemed to be related to distinct aspects of illness experience that we labeled illness/injury, medical care, blood/needle, and aging/death. All items had factor loadings on a single factor above 0.60 except for "seeing an injured or dead person," which had a lower loading on the blood/needle factor. Because of this item’s weaker loading and relationships with other factors, we elected not to include it in factor scores. As might be expected, "death or dying" loaded on the illness/injury factor as well as the aging/death factor.


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  		Table 1. Factor Structure of Illness Fears Based on a Community Surveya
 
The distribution of survey responses is shown in Table 2. Among the six illness/injury items included in this survey, the possibilities of becoming disabled or impaired and of developing a particular illness (eg, breast cancer) were the most frequent sources of unusual distress. Becoming seriously ill generated the least distress. Of those surveyed, 23.3% reported much more nervousness in relation to at least one of the illness/injury items, 14.4% reported much more nervousness in relation to two or more, and 8.5% reported this level of distress with three or more. Among the four medical care items, the thought of having a surgical operation was the most frequent cause of unusual distress. Going to the doctor and taking prescribed medicine were the least frequent causes of such distress. Of those surveyed, 13.3% of respondents reported much more nervousness in relation to at least one of the medical care items, and 5.4% reported that level of distress with two or more. With respect to blood/needle items, 9.0% of respondents reported much more nervousness than other people in relation to one or both items, and 5.4% reported this level of distress with one or both aging/death items.


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  		Table 2. Percentage of Persons Reporting That Various Illness and Medical Care Items Made Them Somewhat More or Much More Nervous Than Other People
 
Table 3 shows the percentage of respondents who reported impairment or distress related to the illness/injury items. If we consider persons who responded at least "moderately," then 15.2% indicated that nervousness related to these items caused them to seek medical attention sooner or more often, 4.4% indicated some interference with medical care (ie, caused delay or avoidance of care or interfered with care), and 10.6% reported impairment or distress (ie, negative effect on life or bothered personally) related to these fears. The table also shows the proportion of respondents who reported morbidity related to the medical care items. Here, 6.2% indicated some interference with medical care, and 8.8% reported impairment or distress. The corresponding percentages for those bothered by blood/needle items were 2.6% and 5.0%, respectively; for those bothered by aging/death items, the figures were 2.0% and 5.2%, respectively.


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  		Table 3. Percentage of Persons Reporting at Least Moderate Impairment and/or Distress Related to Illness and Medical Care Items
 
Table 4 shows correlations between the various fear factors and continuous demographic variables. Although a few of these correlations reached statistical significance, they were of relatively low magnitude (r <= .20). Illness/injury items were positively correlated with age and negatively correlated with health status (higher fear associated with worse health), education, and income. Medical care items were also negatively correlated with health status, education, and income. Blood/needle items were not significantly correlated with these variables, and aging/death items were negatively correlated with health status, education, and income.


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  		Table 4. Correlations Between Fear Factors and Continuous Demographic Variables
 
Table 5 shows comparisons of dimension scores for women and men, nonwhite and white persons, and those with and without medical conditions. Scores for all dimensions were higher among women than among men, but these reached statistical significance only for medical care. No significant differences in mean scores were observed between the small group of nonwhite and white persons. Scores for illness/injury and aging/death items were higher among those with medical conditions than those without, but scores for the remaining dimensions showed no significant differences. When we examined mean illness/injury dimension scores for respondents with and without specific medical conditions, we observed the largest differences among those with high blood pressure (3.0 ± 3.3 vs. 1.8 ± 2.6, p = .000), lung disease (3.3 ± 3.5 vs. 2.0 ± 2.8, p = .058), and stroke (3.4 ± 3.9 vs. 2.1 ± 2.8, p = .206). Differences for medical care items were statistically significant only for lung disease (1.7 ± 2.0 vs. 1.0 ± 1.5, p = .035) and stroke (2.4 ± 2.4 vs. 0.9 ± 1.5, p = .047). Mean scores for blood/needle items were lower in subjects with arthritis (0.3 ± 0.8 vs. 0.5 ± 1.0, p = .050) and diabetes (0.2 ± 0.4 vs. 0.5 ± 1.0, p = .001). Scores for aging/death items tended to be higher in subjects with various medical conditions but failed to achieve statistical significance.


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  		Table 5. Mean (±SD) Fear Dimension Scores According to Gender, Race, and the Presence or Absence of Chronic Medical Conditions
 
We found no significant relationships between the response to illness/injury or medical care items and adherence to health promotion behaviors (ie, healthy diet and regular exercise) or disease detection procedures (ie, regular blood pressure checks and annual Pap smears). For example, the percentage of subjects who reported adhering to each of these behaviors and procedures differed little between those who responded "much more" to three or more illness/injury items (N = 41) and those who gave this response to two or fewer of the same items (N = 440) (healthy diet, 75.6% vs. 77.7%; regular exercise, 48.8% vs. 59.8%; regular blood pressure checks, 70.7% vs. 75.7%; annual Pap smears, 63.6% vs. 66.3%). Respondents who reported that illness/injury fears interfered with their medical care at least moderately were less likely to report adherence with disease detection procedures (regular blood pressure checks, 57.9% vs. 78.1%, {chi}2 = 4.0, df = 1, p = .047; annual Pap smears, 40.0% vs. 69.7%, {chi}2 = 3.8, df = 1, p = .059) but were equally likely to follow health promotion behaviors (healthy diet, 68.4% vs. 75.0%; regular exercise, 57.9% vs. 54.1%).


   DISCUSSION
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
REFERENCES
 
Our survey of health-related fears in the community revealed four separate groupings or dimensions. Items related to various types of illness or injury, including mental illness and disability related to illness, made up the first grouping, and items concerning medical care, including seeing the doctor, taking medicine, going to the hospital, and having an operation, made up the second. Previous factor analytic studies of fear questionnaire data have tended to identify single illness/injury factors, such as fears of doctors and hospitals (6–8). The separation we found is consistent with the differing nature of the items: Illness may be viewed as arising from within, whereas medical care involves potentially avoidable external situations (1). A third grouping of items corresponded to blood-injection-injury phobia, which has been identified as a distinct subtype of specific phobia (10, 15). The characteristic physiologic response (ie, bradycardia and hypotension) of persons exposed to phobic stimuli sets it apart from other specific phobias (11, 12).

We showed that distress related to illness and injury is common in the general population. Almost one-quarter of persons aged 40 to 65 years claimed that at least one illness/injury item caused them much more nervousness than other people. One threshold for phobias might be the number of items rated as much more distressing. Of all respondents, 8.5% reported that three or more illness/injury items distressed them much more than other people, and 10.6% reported impairment or distress related to such fears. However, 5.2% reported that four or more illness/injury items made them much more nervous than others, and if we use as our threshold for caseness interference with medical care (4.4%) or negative effect on life (5.0%), then we obtain prevalence estimates that are close to the 3.1% prevalence of illness/injury phobias in Burlington, Vermont (3) and the 4.9% prevalence of mutilation phobias among women in Calgary, Canada (13).

Previous authors have noted that illness-related fears may influence medical care by increasing care-seeking or causing avoidance of care (17–22). However, we are not aware of earlier attempts to determine how frequently such fears affect care-seeking behavior. Fifteen percent of those surveyed claimed that their fear of illness/injury caused them to seek medical care sooner or more often than they might have otherwise. It is not, of course, clear from their responses whether this led to improved care or, as is likely in some cases, unsuccessful attempts to obtain reassurance (31). Some of the same persons who reported seeking care sooner or more often also claimed that they had avoided or delayed care, presumably under different circumstances. Also, some interference with medical care due to illness/injury fears was reported by 4.4% of persons aged 40 to 65 years that we surveyed. This interference was evident in reports of lesser adherence to disease detection procedures as well. Failure of health anxiety to influence health promotion behaviors has been reported by others (32, 33).

We observed only weak relationships between demographic variables and fear dimension scores. Women had higher scores than men, but only those differences for medical care reached statistical significance. Similarly, Fredrickson et al. (14) observed no gender difference in the prevalence of mutilation phobia. Low negative correlations between education and income were also observed for illness/injury and medical care fears. These findings are consistent with data from the Epidemiologic Catchment Area study and National Comorbidity Survey, showing simple phobias to be more prevalent among those with less education and income (34, 35). We observed no relationship between fear dimensions and age, but the limited age range of our sample may have obscured an association. With respect to age, Agras et al. (3) observed different patterns of prevalence for illness/injury and medical care fears. Illness/injury fears (ie, death, injury, and illness) showed gradually increasing prevalence with a peak in later adult life, whereas medical care fears (ie, doctors and injections) showed a high childhood prevalence followed by a rapid decline in adulthood.

Fears of illness/injury and medical care were associated with self-rated health status and the presence of chronic medical conditions. This suggests that such fears may be a response to illness in vulnerable individuals. Hypochondriasis, which overlaps with illness phobia, has been linked to experience with illness (36, 37), and data obtained from studies of twins suggest that random traumatic events and some social learning may contribute to fear of illness (38). The medical conditions showing the strongest relationship with illness/injury fear were high blood pressure, chronic lung disease, and stroke. Increased psychological distress related to high blood pressure might be a consequence of labeling. Haynes et al. (39) observed a sharp increase in work absenteeism after employees had been told they were hypertensive and hypothesized that such newly labeled hypertensives adopt the sick role and treat themselves as fragile. On the other hand, there is evidence of an association between anxiety and hypertension. For instance, a relationship between anxiety disorders and high blood pressure was observed in the Epidemiological Catchment Area study (40). Also, several prospective studies have found trait anxiety to be a predictor of later blood pressure (43–46). Chronic lung disease and, to a lesser extent, neurological diseases (eg, stroke) are associated with anxiety disorders. In fact, the breathlessness associated with emphysema often evokes a fearful reaction (ie, fear of exertion, leaving home, and being alone) that is best characterized as a specific phobia of illness (47). Our findings are contrary to those of Kellner et al. (48), who did not find an increase in illness fears as measured by the Illness Attitude Scales among patients with chronic lung disease.

Several limitations need to be considered in evaluating the results of this survey. First, the findings may not be representative of the general population. Subjects who were highly educated and predominantly white were recruited from a region of Iowa likely to differ from statewide or nationwide populations. Also, our survey did not include adults of all ages. Although our response rate was satisfactory, a substantial minority of potential subjects were not reached or declined to participate. It is likely that these subjects would have responded to the survey somewhat differently. Another potential limitation has to do with the questions used. We asked persons the extent to which various thoughts or possibilities bothered or made them nervous compared with other people. We cannot be sure that subjects reported only fears or that their judgment about the reactions of others was accurate. In addition, we did not test the reliability of our survey instrument. Finally, we do not know how many of our respondents actually had specific phobias according to DSM-IV criteria and how many had coexisting disorders, such as panic disorder with agoraphobia or other anxiety disorders, that might have excluded a diagnosis of specific phobia. We are conducting follow-up interviews to determine this.

There are several implications of this survey. Our results, although preliminary, indicate that fears of illness and medical care are not only prevalent but may have an unfavorable effect on medical care. Now we need to document interference with various types of care, ranging from disease detection procedures to essential medical care. Using a prospective design, it should be possible to identify patients at risk and to monitor their behavior within a practice or health plan. By determining when care is avoided and the extent of that avoidance, we may be able to gauge the importance of the problem. Of course, some individuals report the reverse: They say that fears cause them to seek medical care sooner or more often. It is likely that some level of anxiety contributes to appropriate monitoring of health and responding to possible signs of disease, but excessive fear may lead to unnecessary care and iatrogenic complications, which are often seen in patients with hypochondriasis and other somatoform disorders (31). By documenting the influence of these behavioral manifestations, we may be able to determine the level at which complications arise.

Finally, we need to determine the origin of such fears. Phobias of illness often occur in response to serious illness events in oneself or others (36). Reactions of this kind have been described, but there is little information concerning their frequency, the illnesses that are likely to provoke them, the patients that are likely to have these reactions, and what aspects of the illness experience are most important (49). Illnesses that are associated with sudden, catastrophic events (eg, bronchial asthma) seem to produce a phobic response in some patients (44, 45). But, the illness or death of a loved one may cause this response as well (50). Genetic factors may also play a role (51, 52), and one study of twins found such factors important in the familial aggregation of blood-injury fears (38). Theories of inherited phobia proneness have implicated abnormal physiologic reactivity, personality traits, and cognitive style (53, 54). Knowledge of etiologic factors, as it unfolds, may be used to guide efforts aimed at prevention and treatment (55). In fact, cognitive theories have already resulted in the testing of successful cognitive behavioral therapy for some illness phobias (56–58).

Received for publication July 2, 1999.

Revision received September 23, 1999.


   REFERENCES
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 

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