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Relationship Functioning And Sexuality Among People with Multiple Sclerosis

http://www.sexscience.org/publications/index.php?category_id=439&subcategory_id=338

February 5, 2003
The Journal of Sex Research
1st Nov, 2002

Multiple Sclerosis (MS) is a disease of the central nervous system that may result in motor, sensory, and cognitive impairment. The progressive nature of the illness and the unpredictability of its development can lead to a high level of uncertainty in the lives of its victims and their families. The ratio of females to males affected is variously claimed to be somewhere in the range of 2:1 (Rolak, 1992) to 3:2 (Clayton, 1989), and onset of the illness generally occurs between 20 and 50 years of age. This is a crucial time of life for the formation of relationships and establishment of family life. The development of such an illness would therefore be expected to have a major impact on the nature and quality of social and intimate relationship. The present study was designed to determine how people with MS are different from people from the general population in the quality of their relationships and their sexuality. The nature of coping strategies employed by respondents and the effectiveness of these strategies in resolving problems was also evaluated.

MS frequently results in increasing dependence upon others for both social and practical support. Hakim et al. (2000) found that MS resulted in reduced social contacts and a shrinking circle of friends, particularly for people with severe disability. Poor mobility was the reason cited for this change. Although the above authors found no higher incidence of divorce among people with MS compared to people from the general population, a large proportion of people with MS had retired early due to the illness. This may explain the reduced social functioning of the respondents with MS. About one third of partners of people with MS also reported that their careers had been affected by the illness of their spouse. Partners also experienced psychological disturbances, with the severity of anxiety and depression showing a strong relationship to the level of disability of their spouse.

Since the family is often the most immediate and obvious source of support, the development of MS has a significant effect on family dynamics. The increased dependence, particularly on the spouse, can place a huge strain on relationships (De Loach & Greer, 1981). One would expect that this strain would relate to the level of disability and to the length of time the person had MS. However, Wollett and Edelmann (1988) found no relationship between levels of disability and marital and life satisfaction of respondents with MS. Whether these finding also applied to partners of people with MS is not known. Wollett and Edelmann (1988) also found that there was no relationship between level of disability and the level of social support from a broader social network. However, respondents in this study may have adjusted to their disability, since it had been in place for at least ten years. Further research should evaluate the extent to which problems and adjustment strategies in relationships occur at different stages of the illness, and how people with MS are different from people in the general population.

Deterioration in relationship functioning following the development of MS does not appear to occur for all people. McCabe, McDonald, Deeks, Vowels, and Cobain (1996) found that about one third of respondents demonstrated a deterioration in their relationship, one third showed no change, and one third showed an improvement in the quality of their relationship. Further, Mohr et al. (1999) found that the prominent response to the development of MS among 94 patients was a deepening in the quality of their relationships and an enhanced appreciation of life ("benefit finding"; p. 380). This response was experienced by a substantially higher number of respondents than was the response of becoming demoralized or experiencing deteriorated relationships.

Mohr et al. (1999) found that the positive reaction of benefit finding was related to the positive coping strategies of positive reappraisal and seeking social support. In contrast, in studies conducted by both McCabe et al. (1996) and Dupont (1996), levels of relationship functioning were lower than in the Mohr et al. study, and respondents were more likely not to seek advice or assistance but to become angry and frustrated and not communicate their difficulties to their partner. The differences in the findings of the above studies may be due to differences in coping strategies adopted by respondents with MS. A number of studies have found that coping style is related to psychological adjustment among people with MS (Jean, Paul, & Beatty, 1999; Pakenham, 1999; Pakenham, Stewart, and Rogers, 1997). Perhaps these different styles of coping also impact on sexual and relationship functioning. The present study evaluated the extent to which there are differences between people with MS and people from the general population in the types of coping strategies employed, and the way in which these impact on sexual and relationship functioning.

A number of studies have explored the sexual functioning of people with MS. There has been a particular focus on the study of erectile disorders in males (e.g., Valleroy & Kraft, 1984), and this research suggests that between 60% and 80% of males with MS experience problems with maintaining a sufficiently strong erection for intercourse. The causes of erectile disorder have also been extensively explored (e.g., Belts, 1996). On the other hand, orgasm phase disorders or sexual dysfunctions among females have received little attention. For example, Hulter and Lundberg (1995) found the incidence of particular sexual dysfunctions among women with MS ranged from 10.6% to 59.6% of respondents. A study by Stenager, Stenager, Jensen, and Boldsen (1990) explored sexual dysfunction among 52 men and 65 women with MS across a broad age range. They found no relationship between level of disability and sexual dysfunction, although 56% of the group experienced some impairment in their sexual functioning.

A further study (McCabe et al., 1996) found that only 35.4% of men with MS and 20.4% of women with MS experienced no sexual dysfunction. Generally speaking, MS was seen to have had a negative impact on the sex lives of respondents. For a majority of respondents there was now less sexual interaction, although most respondents indicated either no concern or a slight level of concern about these changes.

An alternative conceptualization of sexual dysfunction was described by Sanders, Foley, La Rocca, and Zemon (2000). These authors discuss sexual dysfunction among people with MS as being primary, secondary, or tertiary. Primary sexual dysfunction is due to neurological changes that directly affect the genitals, secondary dysfunction is due to more indirect neurological changes (e.g., fatigue, muscle weakness), and tertiary dysfunction is due to psychological and social aspects of MS that may impact on sexual functioning. No data are provided by Sanders et al. on the prevalence of these types of sexual dysfunction among people with MS, but this type of classification is worthy of exploration in future research.

A number of other studies have demonstrated a link between MS and level of sexual dysfunction in both males and females. For example, Dupont (1996) found that both male and female respondents reported that their level of sexual dysfunction had increased significantly since they had developed the illness, although there was no relationship between severity of the illness and level of sexual dysfunction. However, the extent to which the level of dysfunction was due to MS could not be determined, as there was no control group of similar age, gender, and relationship status. The lack of a comparison group is a common shortcoming in studies that examine sexual functioning among people with MS.

Vermote and Peuskens (1996) suggested that the high levels of sexual dysfunction among people with MS may be due to two factors: the physical deterioration that accompanies the illness, and the changes in the dynamics and or power balance within the couple's relationship once one of them has developed MS. Clearly these two propositions need to be explored further. Dupont's (1996) finding that between one quarter and one third of respondents experienced marital dissatisfaction would support the suggestion that the quality of the relationship is an important factor associated with sexual dysfunction. This issue requires further clarification.

The present study was designed to determine differences between people with MS and people from the general population in the nature and quality of their relationships, and in their sexual functioning and sexual satisfaction. Gender differences and the contribution of coping style were also evaluated.

METHOD

Participants

The sample comprised 381 individuals (144 males, mean age = 46.88 years, and 237 females, mean age = 44.45 years) registered with the MS Society of Victoria and 291 individuals (101 males, mean age = 51.03 years, and 190 females, mean age = 44.35 years) drawn from the general population who did not have MS. Respondents were largely Anglo-Saxon in cultural background and were from the middle socioeconomic classes. They ranged in age from 18 to 64 years, and there were no significant differences in the ages of people from the general population and those with MS, or between males and females.

Materials

A brief demographic questionnaire evaluated respondents' gender, age, relationship status, health, age of onset and diagnosis of MS, and severity of symptoms.

The Index of Sexual Satisfaction (ISS; Hudson, 1992) was used to measure respondents' level of satisfaction with their sexual relationship with their partner. This scale requires respondents to rate their level of agreement with 25 statements concerning behaviors, attitudes, events, affect states, and preferences associated with their sexual relationship with their partner on a 7-point scale. A rating of 1 indicates that this statement is true none of the time, whereas a rating of 7 signifies that it is true all the time. A score greater than 30 suggests the presence of a clinically significant degree of sexual discord in the relationship. The ISS has been shown to be a psychometrically sound instrument, with high internal consistency (.92), high short-term test-retest reliability (.94), and good concurrent and construct validity (Hudson, 1992).

Relationship satisfaction was assessed using a modified version of the Kansas Marital Satisfaction (KMS) Scale (Schumm et al., 1986). This scale consists of three items that measure individuals' level of satisfaction with their marriage, their spouse, and the marital relationship. Respondents are asked to rate their level of satisfaction in each of these areas on a scale where 1 = extremely dissatisfied and 7 = extremely satisfied. As the sample used in the present study was not limited to married individuals, the word marriage was replaced with relationship, and the word husband replaced with partner. The KMS Scale has been shown to have good internal consistency (.93) and adequate test-retest reliability (.62-.72) (Schumm et al., 1986). The KMS Scale has also been shown to be a valid instrument, correlating highly with other measures of marital satisfaction and correlating poorly with non-marriage-- related satisfaction items (Schumm et al., 1986).

Sexual dysfunction was measured using the Nature of the Sexual Problem Subscale of the Sexual Dysfunction Scale (SDS; McCabe, 1994). This 30-item subscale acts as a screen for sexual dysfunction. Participants are required to read one of two lists of sexual difficulties (depending on their gender) and tick those areas in which they have had problems. If the respondent has experienced any sexual difficulties, he or she is then asked to indicate what type of assistance he or she has obtained for these difficulties. The Nature of the Sexual Problem Subscale has been shown to be a reliable measure of sexual dysfunction, with adequate internal consistency (.63) (Davis, barber, Bauserman, Schreer, & Davis, 1998).

Several items from the Range of Sexual Activity Subscale of the Sexual Function Scale (SFS: McCabe, 1994) were included in the current questionnaire to help obtain a clearer understanding of the nature of respondents' current sexual behaviour. Participants were asked to indicate how frequently they participated in various forms of physical contact with their partners, using a 5point scale ranging from 1 (never) to 5 (several times a week or more). The Range of Sexual Activity Subscale has been shown to be a reliable measure, with moderate internal consistency (.72) and good test-retest reliability (.88) (Davis et al., 1998).

Coping Style was measured using a shortened 30-item version of Folkman and Lazarus's (1988) Ways of Coping Questionnaire (WOCQ; Scherer, Luther, Wiebe, & Adams, 1998). This questionnaire comprises a list of different cognitive and behavioral strategies a person may use to cope with a stressful situation. Subjects are asked to rate the frequency with which they would use each strategy on a 4-- point Likert-type scale, ranging from 0 (not used) to 3 (used a great deal). For the purposes of this study, the stressful situation participants were asked to envisage was having a chronic illness. The WOCQ has been used extensively in the investigation of coping strategies in a wide variety of situations and populations. Research examining the underlying factor structure of the shortened version of this scale supports its construct validity (Brown, 1994; Scherer et al., 1998).

Procedure

Six-hundred thirty males and females randomly selected from MS Victoria's register and 1,010 males and females randomly selected from the electoral roll were contacted by telephone, given a brief description of the research project, and invited to participate in the study. Those who agreed to participate were sent a questionnaire, consent form, and information sheet in the mail. The questionnaire included the demographic questionnaire, the shortened version of the WOCQ, the ISS, the modified KMS Scale, and the subscales from the SDS and SFS. A postage paid envelope was provided along with the questionnaire to allow participants to return the completed questionnaire easily. In total, 60.5% of contacted individuals with MS agreed to participate, compared to 28.8% of individuals from the general population.

RESULTS

Most of the participants in the study classified themselves as heterosexual (94.6% of males with MS, 95.8% of males from the general population, 97.6% of females with MS, and 99.4% of females from the general population). The majority of respondents were also in de facto relationships or married (70.2% of males with MS, 81.6% of males from the general population, 71.7% of females with MS, and 72.5% of females from the general population).

Tables 1 and 2 demonstrate that both males and females with MS were more likely to experience sexual dysfunction than respondents from the general population. These tables demonstrate that males with MS experienced higher levels of sexual dysfunction than males from the general population for all dysfunctions other than ejaculating too soon, where men from the general population experienced more difficulties. There were also no differences between the groups in levels of pain during intercourse. For females, there were no differences in the frequency of sexual dysfunction between the groups, except that women with MS experienced more problems in masturbation and in experiencing numbness or a lack of sensation during intercourse.

We conducted an analysis of variance to examine differences between people with MS and people from the general population in levels of sexual dysfunction, sexual activity, relationship satisfaction, and sexual satisfaction. The independent variables were gender and group (MS or general population), and the dependent variables were sexual dysfunction (number of sexual problems), sexual activity (frequency of engaging in different sexual activities), relationship satisfaction, and sexual satisfaction. The results demonstrated a significant effect for gender (F^sub 4,353^ = 4.52, p < .001) and for group (F^sub 4,353^ = 4.48, p < .01), but no gender by age interaction effect.

Gender differences were found in levels of sexual dysfunction (F = 9.56, p < .01) and sexual activity (F = 5.20, p < .05), but not in relationship satisfaction or sexual satisfaction. Females had higher levels of sexual dysfunction than males, but lower levels of sexual activity. Group differences were found in levels of sexual dysfunction (F = 13.57, p < .001), sexual activity (F = 5.05, p < .05), relationship satisfaction (F = 5.92, p < .05), and sexual satisfaction (F = 7.05, p < .01). People with MS demonstrated higher levels of sexual dysfunction and lower levels of sexual activity relationship satisfaction, and sexual satisfaction.

Standard multiple regressions were conducted separately for each of the four groups (MS males, MS females, general population males, and general population females) to determine the independent variables (health-related quality-of-life and coping variables) that predicted sexual satisfaction, relationship satisfaction, and sexual dysfunction (see Tables 3-5).

For sexual satisfaction among the MS males, F = 2.10, p < .05, R^sup 2^ = .30. The only significant unique predictor was the adoption of positive coping strategies. For MS females, F = 2.23, p < .05, R^sup 2^ = .18. Significant unique predictors were the adoption of detached coping strategies and poor levels of cognitive functioning. For general population males, F = 2.68, p < .05, R^sup 2^ = .27. Unique predictors were activities of daily living. For general population females, F = 3.31, p < .001, R^sup 2^ = .27. The only unique predictor was the health-related quality-of-life measure related to levels of energy and fatigue (see Table 3).

For relationship satisfaction among MS males, F = 1.50, p >.05. For MS females, F = 2.44, p <.01, R^sup 2^ = .16. Unique predictors were health-related quality of life related to sleep and rest and also cognitive functioning. For general population males, F = 3.56, p < .001, R^sup 2^ = .41. Unique predictors were wishful thinking coping strategies and health-related quality of life related to activities of daily living, pain and discomfort, and rest and sleep. For general population females, F = 2.28, p < .05, R^sup 2^ = .19. Unique predictors were seeking social support coping strategies and the extent to which the women engaged in activities related to daily living (see Table 4).

For sexual dysfunction among MS males, F = 1.05, p > .05. For MS females, F = 2.65, p < .01, R^sup 2^ = .14. Unique predictors were coping strategies related to focusing on the positive and problem-focused coping, and health-related quality of life related to cognitive functioning. For general population males, F = 2.70, p < .01, R^sup 2^ = .29. Unique predictors were coping strategies related to focusing on the positive and seeking social support. For general population females, F = 2.64, p < .01, R^sup 2^ = .16. Unique predictors were health-related quality of life related to energy and fatigue (see Table 5).

We calculated intercorrelations between the number of sexual difficulties, sexual satisfaction, and relationship satisfaction for each of the four groups. For both MS males and males from the general population, the only significant correlation was between sexual satisfaction and relationship satisfaction (r = .72, p < .001; r = .65, p < .001, respectively). The associations between these variables were stronger for females, with MS females demonstrating a significant relationship between sexual difficulties and sexual satisfaction (r = .43, p < .001), and between sexual difficulties and relationship satisfaction (r = -.22, p < .01). For females from the general population, there was a significant relationship between sexual difficulties and sexual satisfaction (r = .41, p < .001), and between sexual satisfaction and relationship satisfaction (r = .40, p < .001).

DISCUSSION

This study was designed to evaluate the level of sexual dysfunction among males and females with MS and to determine how these levels compare with sexual dysfunction among people from the general population. The data clearly indicated that males with MS experienced significantly higher levels of most sexual dysfunctions than males from the general population. This particularly applied to erectile problems, difficulties with masturbation, and lack of sensation or numbness during sexual intercourse. These findings are consistent with previous studies that indicated that males with MS experience difficulties in their erectile functioning (e.g., Belts, 1996; Valleroy & Kraft, 1984) and this may present problems with masturbation. The advent of easy-to-administer oral treatments for erectile problems may reverse these difficulties in some men, and the effectiveness of these treatments should be followed up in future research. The finding in relation to lack of sensation during intercourse is consistent with the peripheral nerve damage that occurs with MS. The interesting aspects of the findings from this study are that the sexual problems that are experienced by men with MS are not restricted to erectile problems and physiological problems associated with MS, and that these sexual difficulties occur more frequently than for men in the general population. An exception to this finding was premature ejaculation, which men from the general population were more likely to experience than were men with MS. MS may slow down the ejaculatory response of men and this may account for the lower levels of this particular sexual dysfunction.

The frequency of problems experienced by men with MS was lower than the frequency experienced by women with MS. In fact, women as a group experienced more sexual problems than men as a group, and the only differences between women with MS and women from the general population were that women with MS were more likely to experience difficulties masturbating and to experience a lack of sensation or numbness during sexual intercourse. These results are consistent with the symptomology of the disorder; therefore, the sexual dysfunctions experienced by women with MS did not extend to those dysfunctions not associated with the physiological symptomology of MS. These findings are consistent with previous studies that have examined the level of sexual dysfunction among women with MS (e.g., McCabe et al., 1996; Stenager et al., 1990). However, they identify the specific areas in which women are experiencing problems, and also make clear that both women with MS and women from the general population experience high levels of sexual dysfunction in most areas.

Consistent with previous findings, the present study found that people with MS experienced lower levels of sexual activity and sexual satisfaction, but higher levels of sexual dysfunction (e.g., Hulter & Lundberg, 1995; McCabe et al., 1996; Valleroy & Kraft, 1984). This suggests that MS has a negative impact on many aspects of the sex lives of people with this illness. However, the adoption of positive coping strategies seems to play some role in the process of sexual adjustment.

This proposal is supported for males with MS, with the coping strategy of focusing on the positive being the only significant predictor of sexual satisfaction among all the coping strategies and health-related variables. The predictors of sexual satisfaction were different for females with MS: Those who adopted a less detached style of coping and those with less cognitive confusion showed higher levels of sexual satisfaction. Thus, women with MS who had the capacity to be more involved with their partners were more likely to experience higher levels of sexual satisfaction. In contrast, sexual satisfaction among people from the general population was predicted by the extent to which they were actively engaged in their day-to-day activities (men) and their levels of energy and fatigue (women). Thus, levels of activity were significant predictors for sexual satisfaction for general population respondents, whereas the major predictor of sexual satisfaction for MS respondents was the way in which their lives were cognitively processed.

These cognitive variables also predicted levels of sexual dysfunction among women with MS, with the cognitive strategies of focusing on the positive, problem-focused coping, and higher levels of cognitive functioning predicting lower levels of sexual dysfunction. Surprisingly, none of the coping strategies or health-related variables predicted levels of sexual dysfunction among males with MS. These findings may suggest that it is the way in which women with MS process the impairment associated with their disability, rather than the objective level of impairment, that is more important in predicting sexual dysfunction. Further research is necessary to explore predictors of sexual dysfunction among MS men, as neither coping strategies nor objective levels of health appear to be significant predictors.

In contrast, coping strategies adopted by men from the general population appeared to impact on their levels of sexual dysfunction, with men who adopted more positive and interpersonally involved coping strategies (focusing on the positive and seeking social support) being less likely to experience sexual dysfunction. As for sexual satisfaction, levels of sexual dysfunction among women from the general population were predicted by levels of energy and fatigue. These results suggest that, while adopting a positive and involved approach to their illness and being cognitively competent are associated with sexual functioning and sexual satisfaction among women with MS, energy levels and feelings of tiredness predict sexual functioning and dissatisfaction among women from the general population. This is an interesting finding that needs to be explored further, since one would expect that low levels of energy and feelings of tiredness would be experienced more frequently by women with MS and would thus be expected to be associated more with sexual functioning.

None of the coping strategies or health-related variables predicted relationship satisfaction for men with MS, whereas cognitive functioning and sleep and rest predicted relationship quality for women with MS. These findings are consistent with previous findings that have suggested that levels of disability and relationship functioning were not related (e.g., Wollett & Edelmann, 1988). However, this finding may not be supported by the partners' perceptions of the relationships, and it is important to evaluate how satisfied they are to obtain an accurate picture of relationship quality.

As opposed to males with MS, a broad range of factors that included coping, levels of pain, rest and sleep, and involvement in day-to-day activities predicted relationship satisfaction among males from the general population. Good health, not engaging in wishful thinking, taking time out to rest, and not being engaged in too many activities were associated with relationship satisfaction among men from the general population. Similar findings with respect to activities were found for women from the general population, as well as being actively engaged in seeking social support.

Although relationship satisfaction was lower among people with MS, fewer coping and health-related variables predicted relationship satisfaction for people with MS than for people from the general population. Further studies are needed to determine what contributes to the low levels of relationship satisfaction among people with MS so that intervention programs can be developed to improve relationship quality for people with MS.

A strong association was found between sexual satisfaction and relationship satisfaction for all respondents. However, sexual difficulties were only associated with relationship satisfaction for MS females and not for the other respondents. Thus, it appears to be sexual satisfaction rather than the nature of sexual functioning that is associated with relationship quality for people from the general population and males with MS. However, consistent with Dupont's (1996) findings, these three variables are all strongly associated for females with MS.

There has been limited research on the sexuality and relationships of people with MS. The current study has identified some of the coping and health-related variables that are associated with relationship and sexual satisfaction as well as sexual dysfunction among males and females with MS, and how they vary from the general population. Of course, these findings only apply to people within the Australian society, and cannot be generalized to other cultural groups. However, the understanding and management of MS within Australia is very similar to that in the U.S. and other western societies. Attitudes toward people with MS and the types of interventions that may be used to address the illness may affect coping strategies and sexual functioning. Thus, it is important that future studies examine these possible relationships across a number of cultural groups to determine similarities and differences.

Further research is also needed to identify other factors that may predict sexuality and relationship variables and to determine how these relationships change over time. A longitudinal study of both people with MS and people from the general population would further inform both researchers and practitioners about how these variables are interrelated. It is also important to explore these issues among the partners of people with MS, to determine whether or not their perceptions of relationship quality and sexual functioning are similar to those of the partners with MS.
 

© 2002 The Journal of Sex Research