SEMINARS I N NEUROLOGY-VOLUME
12, NO. 2 J U N E 1992
Sexuality and Chronic Illness: Biopsychosocial Approach
The clinician who wishes to make a comprehensive assessment and offer treatment of sexual problems to patients with a chronic illness will need a theoretical basis that allows him to understand the complexity of the interaction between somatic, psychologic, social, and chronologic factors. It is fundamental for any appropriate intervention, treatment, or prevention to understand this.
BIOPSYCHOSOCIAL APPROACH
Pathology is the immediate focus of clinical work. It is, however, of great importance that the clinician have concepts concerning health also, and when confronted with sexual pathologic - conditions, he or she needs a concept of sexual health. Such a model provides a goal for interventions and reminds the clinician that an assessment is required of the individual's and the couple's strengths and resources even in the course of counseling. T h e World Health Organization (WHO) definition of sexual health complies with these requirements as follows: "Sexual health is the integration of the somatic, emotional, intellectual, and social aspects in ways that are positively enriching and that will enhance personality, communication, and love."' In recent years modern medicine has accepted the value of operating with an integrative model, favoring an understanding of "good and bad circles" of events more than an explanation through linear "cause/effect" thinking. This development has grown out of new perspectives on psychosomatic and somatopsychic symptoms. Attempts to pigeonhole problems here as organic versus psychogenic most often are of little value. At best, the consequence is a reduction of possible strategies for intervention and treatment. T h e risk involves
somatization or psychologization of complex problems and a limitation in capability to offer optimal professional help to the patient. Optimal health care for the patient and spouse will therefore include optimal assessment of somatic, psychologic, social, and chronologic aspects and their interactions. Although this model in general is widely accepted theoretically, in daily clinical practice its acceptance may vary quite a lot. Because of the organization of health care systems, in which somatically and psychiatrically oriented departments are often separate entities in very different worlds, patients with psychosomatic o r somatopsychologic (and sexual) complaints are at risk in both worlds. Patients having a chronic illness usually are primarily seen and controlled in a somatic setting, which is appropriate in many ways. In that setting, however, there is often little tradition for taking care of sexual and emotional complaints. In psychiatric settings, specialization may mean that the psychiatrist often does not have the optimal professionalism to take care of a patient with a chronic somatic illness. Comprehensive health care for these patients, and their spouses, necessitates collaboration across the traditional boundaries of the professional worlds. The biopsychosocial model2 offers a basic theory (Fig. l), which closely follows the definition of health with an understanding of disease. Sexual dysfunction can be understood then from a perspective similar to that of any other clinical symptom. To understand sexual dysfunction in patients with a chronic illness, an assessment is needed of somatic, psychologic, and social aspects, including those of the couple and family, and of the chronologic factors, using optimal professional skills to focus on their interaction in good and bad circles. From that perspective, discussion of organic vs psychogenic factors may have
Chief Psychiatrist, Psychiatric Hospital, Aalborg, Denmark Reprint requests: Dr. Jensen, Psychiatric Hospital, DK-9100 Aalborg, Denmark Copyright O 1992 by Thieme Medical Publishers, Inc., 381 Park Avenue South, New York, NY 10016. All rights reserved.
Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
Slren Bum Jensen, M.D.
SEMINARS I N NEUROLOGY
VOLUME 12, NUMBER 2 JUNE 1992
THE TIME FACTOR
History
Patient's Age
Duration of Symptoms
Psychological
I
Social
,
+
Spouse Family Society
Figure 1. Sexuality and chronic illness: An integrative model.
some academic interest but bears the risk of reductionalism and a limitation of interventional strategies. T h e discussion of modern sexology as it has been carried out in traditional medicine for years is all too familiar. T h e challenge in the development of modern clinical sexology lies in learning from former errors and not just in reproducing them after a delay of several years.
COUPLE PERSPECTIVE AND THE BIOPSYCHOSOCIAL MODEL Sexual problems occur in relationships. Clinical sexology has developed the view that the "patient" is optimally the couple, although individuals and groups also can be treated in that context. In medical settings, however, the patient is the patient, although in recent years the important role of the family in health care maintenance and compliance has been documented in several studies.' Since couples do not expect to be seen jointly by the physician, the spouse often does not accom136
pany the patient to an appointment with the doctor. T h e physician who does wish to see a spouse must make an extra effort to set u p an appointment with the couple. Not only is the clinician breaking medical tradition, but the patient may even have a hidden agenda for excluding his spouse, especially when sexual problems are at issue. Since many physicians and nurses have few skills in interviewing couples, the professionals and the patient may unite in an agreement not to involve the spouse, despite the fact that this common front is not necessarily appropriate for solving the problems. Familiarity with a couple's approach to chronic illness can be rewarding for the clinician. Many diseases can only be controlled by changes in life-style that affect the whole family. Giving the spouse an active role in health care increases the chance of patient compliance with treatment. Getting to know the couple gives the physician an enhanced sense of involvement in the couple's intimate relationship and their efforts to maintain a high quality of life. The clinician learns to recognize quickly the
Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
Biological
Table 1. Disease Acceptance (DA) Evaluated Through Clinical Examination Compared to a Blinded Evaluation of Somatopsychologic Elements Included in the Disease Acceptance Scale* InterviewClassification
Good DA (n = 39) Moderatelpoor DA (n = 62) Total
DA Scale (No. Reactions) 0-3
4-7
8-1 1
95% 37%
5% 50%
0% 13%
59%
33%
8%
*Data based on results in a study of type 1 diabetics5
distressed couple that needs extra help to meet the challenge of illness. The introduction of periodic, routine visits by the couple into the treatment of chronically ill patients will create a comprehensive setting, in which sexual problems can be discussed along with any other problems. If the health care providers see a great diversity of couples on a regular basis, they will learn the routine of interviewing and will not exclusively experience couples with severe problems. This also opens the opportunity to learn from couples who have enough resources to master their problems.
COUPLE, CHRONIC ILLNESS, AND SEXUAL DYSFUNCTION Systematic evaluation of sexual dysfunction and chronic illness from the perspective of a couple is rather uncommon. Even if "the patient is the couple" from a sexologic perspective, it is very rarely the subject of research. On the other hand, when the couple's perspective is accepted, usually in a sexologic/psychologic setting, data on the soTable 2.
matic factors are often very limited. Studies often need well-defined concepts, which describe elements that are relevant for the couple. Attempts have been made to relate somatopsychologic reactions, the couple's perspective, and sexual dysfunction through the development of a disease acceptance scale in which 11 different parameters are .~-~ evaluated for the patient and the ~ ~ o u s eEach parameter is described through a statement (developed from typical answers in a qualitative study), containing four possible answers by the patient and spouse, from total agreement to total disagreement (Likert scale). The 11 parameters include: depression, constant speculations about the disease, mood, fear of being abandoned, fear of what the future may hold, angerlbitterness at destiny, reduced bodily self-esteem, the illness as an alibi, difficulty in communicating about the disease, tiredness, and feeling labeled by the disease. The relevance of the scale was compared with clinical interviews carried out by an experienced clinician who classified acceptance of the disease into three main groups (good/moderate/poor). Comparison of the data (Table 1) illustrates that more than three reactions increase the risk of being classified as moderate or poor in disease acceptance (95%),whereas fewer than three reactions result in only 62% recordings of good acceptance from a clinical point of view. Disease acceptance (global evaluation) has been shown to be significantly related to the presence of sexual dysfunction. Only 15% of couples with good disease acceptance reported a sexual dysfunction in contrast to 57% of those with moderate or poor disease acceptance. The finding implies an interdependency of disease acceptance (based on the presence of somatopsychologic reactions) and sexual dysfunction. Avoidance of a linear causeleffect line of
Disease Acceptance Scale: Patient's Version* Disagree
Agree Statements
1. 2. 3. 4. 5. 6. 7. 8. 9.
I worry too much about my illness 1 often feel sad or in low spirits because of my illness My moods shift frequently 1 feel bitter and angry at fate because I became ill My partner sometimes uses the illness against me I'm worried and anxious about the future I'm always tired 1 feel my illness is visible 1 have difficulty talking about my illness and the problems it brings 10. 1 worry if our relationship can withstand the long-term stress 11. I speculate too much about my illness *Reprinted with permission from J e n ~ e n . ~
Totally (1)
Partly (2)
0 0 0 0 0 0 0 0 0
0 0 0 0 0
0 0
0 0
0 0 0
Totally
(3)
Partly (41
Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
SEXUALITY AND C H R O N I C ILLNESS-JENSEN
thought opens u p two forms of intervention: treatment of sexual dysfunctions through sex counseling or sex therapy, which might reduce the somatopsychologic problems and result in a better disease acceptance, and treatment of the emotional distress of the disease, which might reduce sexual complaints. The Disease Acceptance Scale was administered to both patient and spouse. Furthermore, both persons were asked how they thought their spouse would answer the questions. The method resulted in "reality" data concerning the same parameters for patient and spouse and "fantasy" data based on their expectations of each other. This implies that, besides its use in research, the disease acceptance scale points out important elements that are relevant in counseling, that is, the parameters in which reality and fantasy answers differ between spouses. T h e disease acceptance scale is shown in Table 2. The disease acceptance of a couple seems to correlate with the presence of sexual dysfunction as well. From research, it may be concluded that, to be appropriate, the counseling of a couple in the medical setting should include the emotional (somatopsychologic) factor and that a reduction in emotional distress in general might reduce the frequency of sexual complaints as well. If the counselors also are able to work with the sexual complaints, a reduction of sexual distress might strengthen emotional well-being and disease acceptance, in general opening up for initiation of a "good" circle. THE INTERESTED PHYSICIAN RECOGNIZES MORE SEXUAL PROBLEMS The frequency of recorded sexual dysfunction in a given population depends on general and specific elements in the actual illness, the personality structure of the patient, the couple's strengths, and even the observer's bias. A Danish study screened 16,000 patients from general practitioner clinics for sexual problems.' T h e variation in reported frequency of sexual problems in the population studied, with regard to several items, depended on the physician. Physicians under 45 years of age reported sexual complaints in their patients five times more often than their older colleagues. Female physicians reported twice as many problems as did male physicians. T h e frequency of sexual dysfunction reported also varied depending on, for example, geographic location and size of city, but not the number of patients seen in the clinic. Interested physicians-that is, female doctors under the age of 45 years, with a clinic in one of the
VOLUME 12, NUMBER 2 JUNE 1992
larger cities in western part of the country-had up to 10 times the frequency found by the typical practitioner. Free choice of general practitioner implies that patients with sexual problems may choose a doctor with a reputation for interest in sexology. On the basis of the study, it can be calculated that a typical general practitioner sees about 4000 adult patients a year for consultation. Interview studies4 indicate that 10 to 15% of the patients (400 to 600 patients) experience sexual dysfunction. In fact, a general practitioner talks about sexuality with one or two patients a week (50 to 100 a year). In 15 cases he will propose a conjoint interview, whereas only three to five actually take place. This minority forms the source material of patients referred to clinics that are more specialized in psychiatry or sexology. -. A similar massive exclusion of patients was seen in a study of diabetics, in which only a minority of the patients, in spite a high frequency of sexual dysfunction, had had any counseling or therapeutic ~ o n t a c tFurthermore, .~ even when the patients were offered the possibility of referral to a specialized sexology unit as part of a systematic research project, only a small minority wanted such contact, and only a few of that small group attended the clinic. Documentation of the frequency of sexual dysfunction in a particular group of patients-for example, those with a specific chronic illness--does not necessarily mean that there is a similar need for treatment in a sexologic setting. Most patients like to discuss problems with their physicians and spouses; almost none of them wishes referral to a sexology specialist (Table 3).
Table 3. Selective Mechanism in Diabetic Patients from a Diabeties Mellitus (DM) Clinic and Sexologic Unit Event
Group 1 (DM Clinic)
Diabetic couples Partner accepts a joint interview Sexual dysfunction Wish sex counseling Referral to Sexologic Unit Seen in Sexologic Unit Diabetic Couples Partner accepts a joint interview Only one contact Sex therapy established Based on data from J e n ~ e n . ~
Group 2 (Sexologic Unit)
89 51 33 10 3
0
25 20 15 10 4
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SEMINARS IN NEUROLOGY
SEXUALITY AND C H R O N I C ILLNESS-JENSEN
Frequencies reported depend on many different factors, including the methodology used in the particular study. However, the use of a similar method for different illnesses may produce quite different results. One major problem is the definition of sexual dysfunction and especially whether the symptom of reduced o r inhibited sexual desire is to be included as a dysfunction. Libido problems are listed in Table 4. Results show that frequencies and type of sexual problems are similar for women with very different kinds of chronic illnesses. None of the groups differs significantly from a control group. The results are more complicated in the case of men. T h e frequencies and symptom patterns in diabetic men, male alcoholics, and even cirrhotics are found to be significantly different from those in the control g r o ~ p Studies .~ on epileptics by other research groups have shown high frequencies of sexual dysfunction, but most often they cover patients living in institutions and not, as in the study already mentioned, in well-treated outpatients attending a university hospital. The study does not indicate that sexual problems are uncommon in epileptics in general, but it does indicate that well cared for epileptics d o not necessarily have sexual problems. Further studies of many different chronic illnesses should be conducted to evaluate the sexual problems related to specific diseases, and especially with the participation of partners. An interesting possibility is that, in the case of some illnesses, an optimal research setting might reduce the frequency of sexual problems to a level at which those remaining might be neglected. If, in a study intended to evaluate sexual dysfunction (for example following a specific surgical proce-
Table 4.
dure), a strategy were to be followed according to which the Couple is interviewed in depth and a counseling session is given before the operation, after the operation, and before the patient's discharge, with a follow-up interview 3 months later, the number of sexual problems as such might be reduced to a level at which very few will be recorded. This could lead to the assumption that the illness induces very few sexual problems, whereas the clinical setting has actually reduced the normal high frequencies of sexual dysfunction, so that only a minority of patients are now affected. This possibility can be used as an argument for creating a comprehensive setting instead of neglecting the problems.
DILEMMA OF PREVENTIVE STRATEGIES IN PUBLIC HEALTH In most areas of modern medicine there is a dilemma with regard to preventive strategies. New knowledge could reduce inappropriate behavior in a population at risk. New research could provide the basis for new knowledge, but the mere existence of new information is not sufficient to induce a change in behavior. Despite the fact that cigarette smoking is a major risk factor in the development of lung cancer, knowing this fact does not automatically cause people to stop. Knowing how AIDS is transmitted does not result in a switch to safe sex, and so on. In the area of sexual dysfunction and chronic illness, as well, it is important that new knowledge be integrated into clinical practice. However, even professionals have their own map of realities: doctors perhaps still smoke, drink, or have "unsafe" sex. Maps might change if hard data were presented but when evidence is based on "soft" data, the result could be strong arguments
Frequencies of Sexual Dysfunction in Different Chronic Illnesses Studied with Similar Method*
Sexual Dysfunction
Diabetes Mellitus (%)
Males Erectile dysfunction Reduced sexual desire Premature ejaculation Retarded ejaculation Total (at least 1 symptom) Females Reduced sexual desire General sexual dysfunction Orgasmic dysfunction Vaginismus Total (at least 1 symptom) 'Based on data from Jensen5and Jensen et aL8 tChronic alcoholism with cirrhosis of the liver.
Chronic Alcoholism (%)
Cirrhosisj (%)
Epilepsy (%)
Controls (%)
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FREQUENCY OF SEXUAL DYSFUNCTION IN CHRONIC ILLNESS
for not listening and no change in decisions. T h e patient who introduces sexual matters often does this discreetly and between-the-lines to find out if the physician can be of help. If the professional does not recognize the signals, the patient will realize that the discussion must wait. T h e main difficulty seems to be that the patient and spouse are aware of their problems but do not talk about them, and the professionals are in a similar situation. T h e main objective should be to establish meaningful settings for education and training that will encourage professionals to build u p a relevant clinical practice. One way could be training and affiliating "thousands of sexologists," but the pressing point, also according to the patient, is the need for caregivers to learn much more about the emotional and sexual aspects of chronic illness in the family. Recent studies indicate that although most patients need some kind of counseling, only a minority are candidates for sex or couple therapy. Therefore professional health care does not mean that all members of the medical profession should be psychotherapists or sexologists, although many could learn more about the informative and counseling process. Training models on different levels can be offered.'jvgT h e following types have been found useful: 1. Informative evenings with patient organizations and professionals 2. Brief thematic training courses, involving all staff members in a given department, with focus on attitudes, knowledge, and clinical practice, concluding with strategies for change 3. Training courses for interested professionals from different departments working with the same kind of disease 4. Training courses for interested professionals from different departments working with different kinds of chronic illness 5. Training courses on sexual counseling in general 6. Training courses in sex therapylcouples therapy
VOLUME 12, NUMBER 2 JUNE 1992
In Denmark a 1-year postgraduate course is held on sexual counseling; since 1983, there has been a 2 %-year postgraduate training program (Sexologic Workshop) available. It involves educational courses 2 or 3 days a month. T h e sessions are supervised by experienced clinicians in groups of ongoing therapies practiced by the participants. T h e course is interdisciplinary. Furthermore, supervision groups, geographically distributed, composed of counselors or therapists, have been organized. It is possible for the group to obtain support of a supervisor for a 1-year course, which includes training in everyday clinical practice. Clinical practice will change with advancement of knowledge and change of attitudes. T h e institution of new training programs at present seems to be one of the most important tools for reducing sexual problems for patients and couples having a chronic illness in the family. Such intervention is a rewarding experience for the professional and gives relief from unnecessary pain to the patient and spouse.
REFERENCES 1. World Health Organization. Education a n d treatment in human sexuality. Geneva: World Health Organization Technical Reports, Series 572, 1975 2. Engel GL. Homeostasis, behavioral adjustment and the concept of health and disease. In: Grinker R, ed: Midcentury psychiatry. Springfield, IL: Charles C Thomas, 1953:33-59 3. Minuchin S, Rosman BL, Baker L. Psychosomatic families. Cambridge MA: Harvard University Press, 1978 4. Jensen SB. Sexual relationships in couples with a diabetic partner. J Sex Mar T h e r 1985; 1 1:259-70 5. Jensen SB. Sexual dysfunction and diabetes rnellitus. Dissertation. Nord Sexol Suppl 1988; 1: 1-88 6. Schover LR, Jensen SB. Sexuality and chronic illness-a comprehensive approach. New York: Guilford Press, 1988 7. Jensen SB. Clinical sexology in general practice. Ugeskr Laeger 1982; 144:2484-9 8. Jensen P, Jensen SB, SZrensen PS, et al. Sexual dysfunction in male and female patients with epilepsy. Arch Sex Behav 1990, 19:l-14 9. Jensen SB, Schover LR. Brief sexual counseling for medical patients. J Sex Mar T h e r 1988, 14: 13-28
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SEMINARS IN NEUROLOGY
12, NO. 2 J U N E 1992
Sexuality and Chronic Illness: Biopsychosocial Approach
The clinician who wishes to make a comprehensive assessment and offer treatment of sexual problems to patients with a chronic illness will need a theoretical basis that allows him to understand the complexity of the interaction between somatic, psychologic, social, and chronologic factors. It is fundamental for any appropriate intervention, treatment, or prevention to understand this.
BIOPSYCHOSOCIAL APPROACH
Pathology is the immediate focus of clinical work. It is, however, of great importance that the clinician have concepts concerning health also, and when confronted with sexual pathologic - conditions, he or she needs a concept of sexual health. Such a model provides a goal for interventions and reminds the clinician that an assessment is required of the individual's and the couple's strengths and resources even in the course of counseling. T h e World Health Organization (WHO) definition of sexual health complies with these requirements as follows: "Sexual health is the integration of the somatic, emotional, intellectual, and social aspects in ways that are positively enriching and that will enhance personality, communication, and love."' In recent years modern medicine has accepted the value of operating with an integrative model, favoring an understanding of "good and bad circles" of events more than an explanation through linear "cause/effect" thinking. This development has grown out of new perspectives on psychosomatic and somatopsychic symptoms. Attempts to pigeonhole problems here as organic versus psychogenic most often are of little value. At best, the consequence is a reduction of possible strategies for intervention and treatment. T h e risk involves
somatization or psychologization of complex problems and a limitation in capability to offer optimal professional help to the patient. Optimal health care for the patient and spouse will therefore include optimal assessment of somatic, psychologic, social, and chronologic aspects and their interactions. Although this model in general is widely accepted theoretically, in daily clinical practice its acceptance may vary quite a lot. Because of the organization of health care systems, in which somatically and psychiatrically oriented departments are often separate entities in very different worlds, patients with psychosomatic o r somatopsychologic (and sexual) complaints are at risk in both worlds. Patients having a chronic illness usually are primarily seen and controlled in a somatic setting, which is appropriate in many ways. In that setting, however, there is often little tradition for taking care of sexual and emotional complaints. In psychiatric settings, specialization may mean that the psychiatrist often does not have the optimal professionalism to take care of a patient with a chronic somatic illness. Comprehensive health care for these patients, and their spouses, necessitates collaboration across the traditional boundaries of the professional worlds. The biopsychosocial model2 offers a basic theory (Fig. l), which closely follows the definition of health with an understanding of disease. Sexual dysfunction can be understood then from a perspective similar to that of any other clinical symptom. To understand sexual dysfunction in patients with a chronic illness, an assessment is needed of somatic, psychologic, and social aspects, including those of the couple and family, and of the chronologic factors, using optimal professional skills to focus on their interaction in good and bad circles. From that perspective, discussion of organic vs psychogenic factors may have
Chief Psychiatrist, Psychiatric Hospital, Aalborg, Denmark Reprint requests: Dr. Jensen, Psychiatric Hospital, DK-9100 Aalborg, Denmark Copyright O 1992 by Thieme Medical Publishers, Inc., 381 Park Avenue South, New York, NY 10016. All rights reserved.
Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
Slren Bum Jensen, M.D.
SEMINARS I N NEUROLOGY
VOLUME 12, NUMBER 2 JUNE 1992
THE TIME FACTOR
History
Patient's Age
Duration of Symptoms
Psychological
I
Social
,
+
Spouse Family Society
Figure 1. Sexuality and chronic illness: An integrative model.
some academic interest but bears the risk of reductionalism and a limitation of interventional strategies. T h e discussion of modern sexology as it has been carried out in traditional medicine for years is all too familiar. T h e challenge in the development of modern clinical sexology lies in learning from former errors and not just in reproducing them after a delay of several years.
COUPLE PERSPECTIVE AND THE BIOPSYCHOSOCIAL MODEL Sexual problems occur in relationships. Clinical sexology has developed the view that the "patient" is optimally the couple, although individuals and groups also can be treated in that context. In medical settings, however, the patient is the patient, although in recent years the important role of the family in health care maintenance and compliance has been documented in several studies.' Since couples do not expect to be seen jointly by the physician, the spouse often does not accom136
pany the patient to an appointment with the doctor. T h e physician who does wish to see a spouse must make an extra effort to set u p an appointment with the couple. Not only is the clinician breaking medical tradition, but the patient may even have a hidden agenda for excluding his spouse, especially when sexual problems are at issue. Since many physicians and nurses have few skills in interviewing couples, the professionals and the patient may unite in an agreement not to involve the spouse, despite the fact that this common front is not necessarily appropriate for solving the problems. Familiarity with a couple's approach to chronic illness can be rewarding for the clinician. Many diseases can only be controlled by changes in life-style that affect the whole family. Giving the spouse an active role in health care increases the chance of patient compliance with treatment. Getting to know the couple gives the physician an enhanced sense of involvement in the couple's intimate relationship and their efforts to maintain a high quality of life. The clinician learns to recognize quickly the
Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
Biological
Table 1. Disease Acceptance (DA) Evaluated Through Clinical Examination Compared to a Blinded Evaluation of Somatopsychologic Elements Included in the Disease Acceptance Scale* InterviewClassification
Good DA (n = 39) Moderatelpoor DA (n = 62) Total
DA Scale (No. Reactions) 0-3
4-7
8-1 1
95% 37%
5% 50%
0% 13%
59%
33%
8%
*Data based on results in a study of type 1 diabetics5
distressed couple that needs extra help to meet the challenge of illness. The introduction of periodic, routine visits by the couple into the treatment of chronically ill patients will create a comprehensive setting, in which sexual problems can be discussed along with any other problems. If the health care providers see a great diversity of couples on a regular basis, they will learn the routine of interviewing and will not exclusively experience couples with severe problems. This also opens the opportunity to learn from couples who have enough resources to master their problems.
COUPLE, CHRONIC ILLNESS, AND SEXUAL DYSFUNCTION Systematic evaluation of sexual dysfunction and chronic illness from the perspective of a couple is rather uncommon. Even if "the patient is the couple" from a sexologic perspective, it is very rarely the subject of research. On the other hand, when the couple's perspective is accepted, usually in a sexologic/psychologic setting, data on the soTable 2.
matic factors are often very limited. Studies often need well-defined concepts, which describe elements that are relevant for the couple. Attempts have been made to relate somatopsychologic reactions, the couple's perspective, and sexual dysfunction through the development of a disease acceptance scale in which 11 different parameters are .~-~ evaluated for the patient and the ~ ~ o u s eEach parameter is described through a statement (developed from typical answers in a qualitative study), containing four possible answers by the patient and spouse, from total agreement to total disagreement (Likert scale). The 11 parameters include: depression, constant speculations about the disease, mood, fear of being abandoned, fear of what the future may hold, angerlbitterness at destiny, reduced bodily self-esteem, the illness as an alibi, difficulty in communicating about the disease, tiredness, and feeling labeled by the disease. The relevance of the scale was compared with clinical interviews carried out by an experienced clinician who classified acceptance of the disease into three main groups (good/moderate/poor). Comparison of the data (Table 1) illustrates that more than three reactions increase the risk of being classified as moderate or poor in disease acceptance (95%),whereas fewer than three reactions result in only 62% recordings of good acceptance from a clinical point of view. Disease acceptance (global evaluation) has been shown to be significantly related to the presence of sexual dysfunction. Only 15% of couples with good disease acceptance reported a sexual dysfunction in contrast to 57% of those with moderate or poor disease acceptance. The finding implies an interdependency of disease acceptance (based on the presence of somatopsychologic reactions) and sexual dysfunction. Avoidance of a linear causeleffect line of
Disease Acceptance Scale: Patient's Version* Disagree
Agree Statements
1. 2. 3. 4. 5. 6. 7. 8. 9.
I worry too much about my illness 1 often feel sad or in low spirits because of my illness My moods shift frequently 1 feel bitter and angry at fate because I became ill My partner sometimes uses the illness against me I'm worried and anxious about the future I'm always tired 1 feel my illness is visible 1 have difficulty talking about my illness and the problems it brings 10. 1 worry if our relationship can withstand the long-term stress 11. I speculate too much about my illness *Reprinted with permission from J e n ~ e n . ~
Totally (1)
Partly (2)
0 0 0 0 0 0 0 0 0
0 0 0 0 0
0 0
0 0
0 0 0
Totally
(3)
Partly (41
Downloaded by: University of Pennsylvania Libraries. Copyrighted material.
SEXUALITY AND C H R O N I C ILLNESS-JENSEN
thought opens u p two forms of intervention: treatment of sexual dysfunctions through sex counseling or sex therapy, which might reduce the somatopsychologic problems and result in a better disease acceptance, and treatment of the emotional distress of the disease, which might reduce sexual complaints. The Disease Acceptance Scale was administered to both patient and spouse. Furthermore, both persons were asked how they thought their spouse would answer the questions. The method resulted in "reality" data concerning the same parameters for patient and spouse and "fantasy" data based on their expectations of each other. This implies that, besides its use in research, the disease acceptance scale points out important elements that are relevant in counseling, that is, the parameters in which reality and fantasy answers differ between spouses. T h e disease acceptance scale is shown in Table 2. The disease acceptance of a couple seems to correlate with the presence of sexual dysfunction as well. From research, it may be concluded that, to be appropriate, the counseling of a couple in the medical setting should include the emotional (somatopsychologic) factor and that a reduction in emotional distress in general might reduce the frequency of sexual complaints as well. If the counselors also are able to work with the sexual complaints, a reduction of sexual distress might strengthen emotional well-being and disease acceptance, in general opening up for initiation of a "good" circle. THE INTERESTED PHYSICIAN RECOGNIZES MORE SEXUAL PROBLEMS The frequency of recorded sexual dysfunction in a given population depends on general and specific elements in the actual illness, the personality structure of the patient, the couple's strengths, and even the observer's bias. A Danish study screened 16,000 patients from general practitioner clinics for sexual problems.' T h e variation in reported frequency of sexual problems in the population studied, with regard to several items, depended on the physician. Physicians under 45 years of age reported sexual complaints in their patients five times more often than their older colleagues. Female physicians reported twice as many problems as did male physicians. T h e frequency of sexual dysfunction reported also varied depending on, for example, geographic location and size of city, but not the number of patients seen in the clinic. Interested physicians-that is, female doctors under the age of 45 years, with a clinic in one of the
VOLUME 12, NUMBER 2 JUNE 1992
larger cities in western part of the country-had up to 10 times the frequency found by the typical practitioner. Free choice of general practitioner implies that patients with sexual problems may choose a doctor with a reputation for interest in sexology. On the basis of the study, it can be calculated that a typical general practitioner sees about 4000 adult patients a year for consultation. Interview studies4 indicate that 10 to 15% of the patients (400 to 600 patients) experience sexual dysfunction. In fact, a general practitioner talks about sexuality with one or two patients a week (50 to 100 a year). In 15 cases he will propose a conjoint interview, whereas only three to five actually take place. This minority forms the source material of patients referred to clinics that are more specialized in psychiatry or sexology. -. A similar massive exclusion of patients was seen in a study of diabetics, in which only a minority of the patients, in spite a high frequency of sexual dysfunction, had had any counseling or therapeutic ~ o n t a c tFurthermore, .~ even when the patients were offered the possibility of referral to a specialized sexology unit as part of a systematic research project, only a small minority wanted such contact, and only a few of that small group attended the clinic. Documentation of the frequency of sexual dysfunction in a particular group of patients-for example, those with a specific chronic illness--does not necessarily mean that there is a similar need for treatment in a sexologic setting. Most patients like to discuss problems with their physicians and spouses; almost none of them wishes referral to a sexology specialist (Table 3).
Table 3. Selective Mechanism in Diabetic Patients from a Diabeties Mellitus (DM) Clinic and Sexologic Unit Event
Group 1 (DM Clinic)
Diabetic couples Partner accepts a joint interview Sexual dysfunction Wish sex counseling Referral to Sexologic Unit Seen in Sexologic Unit Diabetic Couples Partner accepts a joint interview Only one contact Sex therapy established Based on data from J e n ~ e n . ~
Group 2 (Sexologic Unit)
89 51 33 10 3
0
25 20 15 10 4
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SEMINARS IN NEUROLOGY
SEXUALITY AND C H R O N I C ILLNESS-JENSEN
Frequencies reported depend on many different factors, including the methodology used in the particular study. However, the use of a similar method for different illnesses may produce quite different results. One major problem is the definition of sexual dysfunction and especially whether the symptom of reduced o r inhibited sexual desire is to be included as a dysfunction. Libido problems are listed in Table 4. Results show that frequencies and type of sexual problems are similar for women with very different kinds of chronic illnesses. None of the groups differs significantly from a control group. The results are more complicated in the case of men. T h e frequencies and symptom patterns in diabetic men, male alcoholics, and even cirrhotics are found to be significantly different from those in the control g r o ~ p Studies .~ on epileptics by other research groups have shown high frequencies of sexual dysfunction, but most often they cover patients living in institutions and not, as in the study already mentioned, in well-treated outpatients attending a university hospital. The study does not indicate that sexual problems are uncommon in epileptics in general, but it does indicate that well cared for epileptics d o not necessarily have sexual problems. Further studies of many different chronic illnesses should be conducted to evaluate the sexual problems related to specific diseases, and especially with the participation of partners. An interesting possibility is that, in the case of some illnesses, an optimal research setting might reduce the frequency of sexual problems to a level at which those remaining might be neglected. If, in a study intended to evaluate sexual dysfunction (for example following a specific surgical proce-
Table 4.
dure), a strategy were to be followed according to which the Couple is interviewed in depth and a counseling session is given before the operation, after the operation, and before the patient's discharge, with a follow-up interview 3 months later, the number of sexual problems as such might be reduced to a level at which very few will be recorded. This could lead to the assumption that the illness induces very few sexual problems, whereas the clinical setting has actually reduced the normal high frequencies of sexual dysfunction, so that only a minority of patients are now affected. This possibility can be used as an argument for creating a comprehensive setting instead of neglecting the problems.
DILEMMA OF PREVENTIVE STRATEGIES IN PUBLIC HEALTH In most areas of modern medicine there is a dilemma with regard to preventive strategies. New knowledge could reduce inappropriate behavior in a population at risk. New research could provide the basis for new knowledge, but the mere existence of new information is not sufficient to induce a change in behavior. Despite the fact that cigarette smoking is a major risk factor in the development of lung cancer, knowing this fact does not automatically cause people to stop. Knowing how AIDS is transmitted does not result in a switch to safe sex, and so on. In the area of sexual dysfunction and chronic illness, as well, it is important that new knowledge be integrated into clinical practice. However, even professionals have their own map of realities: doctors perhaps still smoke, drink, or have "unsafe" sex. Maps might change if hard data were presented but when evidence is based on "soft" data, the result could be strong arguments
Frequencies of Sexual Dysfunction in Different Chronic Illnesses Studied with Similar Method*
Sexual Dysfunction
Diabetes Mellitus (%)
Males Erectile dysfunction Reduced sexual desire Premature ejaculation Retarded ejaculation Total (at least 1 symptom) Females Reduced sexual desire General sexual dysfunction Orgasmic dysfunction Vaginismus Total (at least 1 symptom) 'Based on data from Jensen5and Jensen et aL8 tChronic alcoholism with cirrhosis of the liver.
Chronic Alcoholism (%)
Cirrhosisj (%)
Epilepsy (%)
Controls (%)
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FREQUENCY OF SEXUAL DYSFUNCTION IN CHRONIC ILLNESS
for not listening and no change in decisions. T h e patient who introduces sexual matters often does this discreetly and between-the-lines to find out if the physician can be of help. If the professional does not recognize the signals, the patient will realize that the discussion must wait. T h e main difficulty seems to be that the patient and spouse are aware of their problems but do not talk about them, and the professionals are in a similar situation. T h e main objective should be to establish meaningful settings for education and training that will encourage professionals to build u p a relevant clinical practice. One way could be training and affiliating "thousands of sexologists," but the pressing point, also according to the patient, is the need for caregivers to learn much more about the emotional and sexual aspects of chronic illness in the family. Recent studies indicate that although most patients need some kind of counseling, only a minority are candidates for sex or couple therapy. Therefore professional health care does not mean that all members of the medical profession should be psychotherapists or sexologists, although many could learn more about the informative and counseling process. Training models on different levels can be offered.'jvgT h e following types have been found useful: 1. Informative evenings with patient organizations and professionals 2. Brief thematic training courses, involving all staff members in a given department, with focus on attitudes, knowledge, and clinical practice, concluding with strategies for change 3. Training courses for interested professionals from different departments working with the same kind of disease 4. Training courses for interested professionals from different departments working with different kinds of chronic illness 5. Training courses on sexual counseling in general 6. Training courses in sex therapylcouples therapy
VOLUME 12, NUMBER 2 JUNE 1992
In Denmark a 1-year postgraduate course is held on sexual counseling; since 1983, there has been a 2 %-year postgraduate training program (Sexologic Workshop) available. It involves educational courses 2 or 3 days a month. T h e sessions are supervised by experienced clinicians in groups of ongoing therapies practiced by the participants. T h e course is interdisciplinary. Furthermore, supervision groups, geographically distributed, composed of counselors or therapists, have been organized. It is possible for the group to obtain support of a supervisor for a 1-year course, which includes training in everyday clinical practice. Clinical practice will change with advancement of knowledge and change of attitudes. T h e institution of new training programs at present seems to be one of the most important tools for reducing sexual problems for patients and couples having a chronic illness in the family. Such intervention is a rewarding experience for the professional and gives relief from unnecessary pain to the patient and spouse.
REFERENCES 1. World Health Organization. Education a n d treatment in human sexuality. Geneva: World Health Organization Technical Reports, Series 572, 1975 2. Engel GL. Homeostasis, behavioral adjustment and the concept of health and disease. In: Grinker R, ed: Midcentury psychiatry. Springfield, IL: Charles C Thomas, 1953:33-59 3. Minuchin S, Rosman BL, Baker L. Psychosomatic families. Cambridge MA: Harvard University Press, 1978 4. Jensen SB. Sexual relationships in couples with a diabetic partner. J Sex Mar T h e r 1985; 1 1:259-70 5. Jensen SB. Sexual dysfunction and diabetes rnellitus. Dissertation. Nord Sexol Suppl 1988; 1: 1-88 6. Schover LR, Jensen SB. Sexuality and chronic illness-a comprehensive approach. New York: Guilford Press, 1988 7. Jensen SB. Clinical sexology in general practice. Ugeskr Laeger 1982; 144:2484-9 8. Jensen P, Jensen SB, SZrensen PS, et al. Sexual dysfunction in male and female patients with epilepsy. Arch Sex Behav 1990, 19:l-14 9. Jensen SB, Schover LR. Brief sexual counseling for medical patients. J Sex Mar T h e r 1988, 14: 13-28
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