Impact of Erectile Dysfunction on Quality of Life: Patient and Partner Perspectives

Impact of erectile dysfunction on quality of life: patient and partner perspectives

G Wagner1*, KS Fugl-Meyer2 and AR Fugl-Meyer2

1Division of Sexual Physiology, Rigshospitalet, Copenhagen, Denmark; and 2Department of Neuroscience, Rehabilitation Medicine and Sexology Unit, Uppsala University, Sweden

Quality of life (QoL) has become one of the important parameters in the evaluation of treatment and assessment of medical conditions, and it may be an important tool in determining the urgency of the need for therapeutic intervention for erectile dysfunction (ED). It is important to evaluate QoL of the couple, because men and women alike will suffer because of male erectile disability. Future drug trials, as well as studies of sexological intervention programs, should involve both partners. International Journal of Impotence Research (2000) 12, Suppl 4, S144±S146.

Keywords: psychosocial disorders; sexual relationships; questionnaires; quality of life measures

Introduction matic situation of a couple unable to perform physical intercourse. At the WHO First International Consultation on At the NIH Conference on Impotence in 1992, it was Erectile Dysfunction in 1999, several of these issues stated: were taken up again. However, the years in between `Because males, especially older males, are had witnessed a dramatic development in basic and particularly sensitive to the social support of clinical research focused on enabling the membrum intimate relationships, withdrawal from these to regain its erectile capacity. This research resulted relationships because of (erectile dysfunction) in the development of pharmacological break- fears may have a negative effect on their overall through compounds that could be administered health'.1 orally. The 1999 Consultation also managed to deal Several important needs were identi®ed and recom- with female sexuality and quality of life in ED, mendations were made at that conference. These thereby broadening the scope of the problem from included: recommendations for future social and simply a penile insuf®ciency condition to one that psychological research on the impact of erectile touches many aspects of psychosexual and psycho- dysfunction on subjects, their partners, their inter- social functioning.2 actions, factors associated with seeking care and studies to characterize the signi®cance of erectile function and dysfunction in women. The education of physicians and other health care professionals in Quality of life aspects of human sexuality was also identi®ed as an urgent need. Furthermore, the term `impotence' was aban- During the last several decades, quality of life (QoL) doned and replaced with `erectile dysfunction' has become one of the important parameters in (ED). This was more than a semantic re®nement. evaluation of treatment and assessment of life Rather, it was believed to be a more speci®c conditions. To a great extent, the parameter is description of the condition focusing on the mem- over-used, and although it seems easy to under- brum itself and its incapacity of function. Thus, to stand, it is a highly ambiguous concept. Its complex- some extent this new de®nition fractionated the ity is demonstrated by the 1995 WHO de®nition: problem away from the global concerns and proble- `QoL is de®ned as individual's perception of their position in life in the context of the culture and value systems in which they live in relation to their goals, expectations, standards *Correspondence: G Wagner, Division of Sexual Physiology, Suite 7121 Rigshospitalet, University Hospital Copenhagen, and concerns. It is a broad ranging concept Blegdamsvej, DK 2100, Copenhagen, Denmark. affected in a complex way by the person's E-mail: [email protected]®.ku.dk or Gorm@m®.ku.dk physical health, psychological state, level of Impact of ED on quality of life G Wagner et al

Table 1 Erectile dysfunction `bother scale'. Adapted from: WHO 1st International Consultation on Erectile Function, Paris, 1999 S145

Mixed Very Rather about equally Rather Very dissatis®ed dissatis®ed satis®ed and dissatis®ed satis®ed satis®ed

If you were to spend the rest of your life with 12 3 45 your erectile condition the way it is now, how would you feel about that?

independence, social relationships and their had a signi®cantly higher prevalence of sexual relationships to salient features of their disabilities. Among those who reported being environment'.3 sexually active during the last 12 months, 5% of the men and 4% of the women had experienced Realizing the diversity inherent in this de®nition, male penile erectile dysfunction. Interestingly, this and attempting to balance the situation of the was stated as a `problem' by 69% of the men who primary care physician who has only a limited time had this experience, but 74% of women with a to form an impression, the 1st Consultation on ED dysfunctional male partner stated that ED was a has recommended a one-item health-related distress `problem'. scale. To a certain extent this single question may Moreover, women who reported that their partner provide information about the urgency of the need had ED reported their own sexual dysfunction for therapeutic intervention (Table 1). Furthermore, signi®cantly more often than those with erectile a simple, but well validated generic life satisfaction well-functioning partners.6 In these women, de- instrument (with four items) has been recommended creased sexual interest occurred in 60% (compared as a tool to follow the overall intimacy and 4 to 29%), lubrication disability in 44% (compared to emotional outcome of a given treatment. 11%) and dif®culty in achieving orgasm in 52% (compared to 20%). It is therefore hardly surprising that 75% of men who considered their ED to be a problem were not sexually satis®ed, and 82% of QoL for the couple female partners of ED-men had a low level of sexual satisfaction. To our knowledge, no epidemiological studies of couples where the extent to which male incapacity of penile erection prevents sexual intercourse are Conclusion available. It should be emphasized that inability of erection (ED) is not identical to having an erectile Although the cause and effect relationship of the problem. Some information of the impact of ED on results described above are not yet clear and the couple can be extracted from a large scale evidently complex, an overall conclusion can be epidemiological study conducted in Sweden in formulated. That is, to a great extent, men and 5 1996. women alike will suffer because of male erectile This study, which contained a nationally repre- disability. Moreover, with great probability, men sentative random sample of 1335 women and 1475 will also suffer when their female partners have men between 18±74 y was based upon a comb- sexual disabilities. Sexual disabilities and problems ination of face-to-face structured interviews and cannot be seen as isolated sexual phenomena that self-administered questionnaires. Interviews were only involve one symptom-bearer with one symp- conducted in the respondents' homes and only tom. Because of this, one can emphasize the one person within a given household participated. importance of involving the couple, both in drug The interview and questionnaires included about trials and in sexological intervention programs Ð be 800 variables and the results of the study are brie¯y they psychotherapeutic or pharmacological. Rather discussed below. than the term `impotence', perhaps the very best The prevalence of sexual disability in women phrase to describe ED might be the `impotent was substantially higher than in men. Forty-seven couple'. percent of the women who have been sexually active during the 12 months preceding the interview reported one or more sexual disability (21% reported having 1 disability, 12% 2 and 14% had References between 3 and 5 disabilities). In contrast, only 26% of men reported sexual dysfunction. In general, and 1 NIH Consensus Development Panel on Impotence. JAMA 1993; independent of gender, older groups (>50 y of age), 270: 83±90.

International Journal of Impotence Research Impact of ED on quality of life G Wagner et al S146 2 1st International Consultation on Erectile Dysfunction, Paris 5 Fugl-Meyer AR, Fugl-Meyer KS. Sexual disabilities, problems 1999. In Press. and satisfaction in 18±74-y-old-Swedes. Scand J Sexol 1999; 2: 3 WHO QoL Group. Measuring Quality of life. The Development 79±105. of the World Health Quality of Life Instrument (WHO QoL), 6 Fugl-Meyer KS. Erectile problems Ð the perspective of the Geneva, 1995. female. Scand J Urol Nephrol 1998; 32(Suppl 197): 12. 4 G Wagner et al. Symptom Score in and Quality of Life In: 1st International Consultation on Erectile Dysfunction (ED) A. Jardin: Paris, 2000.

Appendix support studies dealing with life satisfaction as opposed to life threatening conditions? Public education in this area is something that ISIR and Open discussion following Dr Wagner's presentation SSI and ESIR and all the societies could do.

Dr Lewis: What is really important about Fugl- Dr Morales: The Social Control Committee of the Meyer is the three-stepped analysis. First, the 1st Consultation speci®cally asked these questions. identity of the problem, then the question, `does it The conclusion was that the public is interested but bother you?'; ®nally, `how does that affect your total they don't want governments to spend money in this sex life?'. This continuity of questions has never speci®c area because there are areas of higher been asked in any of our epidemiological studies. priority. Perception by the governments, the medical schools and physicians all don't believe this is Dr Lewis: We are collecting data now, and have important. about a 75% return, to ®nd out the current level of sexual education in these schools. We are trying to ®nd out how many hours, who provides it, etc. The Dr Sharlip: Prostate cancer dominates the AUA medical schools in the West and the Southeast are because it's a life threatening condition. ED affects a extremely low. lot more people than prostate cancer and we can probably do a lot more good for quality of life and Dr Sharlip: Do governments and societies care life satisfaction than we can by treating prostate about life satisfaction? Is there enough money to cancer, which may not work anyway.

International Journal of Impotence Research