Rheumatology Advance Access originally published online on August 3, 2009
Rheumatology 2009 48(11):1337-1338; doi:10.1093/rheumatology/kep231
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Editorial |
Sex and the spondylitic
1Rheumatology Department, Northwick Park Hospital, Harrow, Middlesex, UK
Correspondence to: Rheumatology Department, Northwick Park Hospital, Harrow, Middlesex HA1 3UJ, UK. E-mail: Andrew.Keat{at}nwlh.nhs.uk
In this issue of the Journal, Healey et al. [1] should be congratulated for tackling a rather taboo subject in rheumatology, namely the problems that people with AS have in their sex lives. In the best traditions of clinical research, however, this work raises more questions than it answers. As a result, the study is not susceptible to easy interpretation but nonetheless underlines one important message—that life quality may be subtly impaired in AS—and points out many areas for future research.
Their approach of simply inviting individuals with known spondylitis to fill in a questionnaire is a good start. Although 36% of the patients preferred not to disclose the information or at least to complete the questionnaire, the response rate was commendable. Inevitably, those who completed the questionnaire were people who attended hospitals and, hence, those with most severe disease. Nonetheless, those at the more severe end of the disease spectrum may reasonably be considered to be the individuals who are of most interest. One major problem is that it is difficult to compare data obtained in this way with data from the normal population or from people with other types of musculoskeletal disorders although some comparative data have been cited. Few middle-aged male readers will be surprised to learn that older men reported more sexual problems than younger ones.
The study mentions the kind of issues involved but does not dissect them directly. It concludes that psychological and social issues are linked with sexual problems in male spondylitics, but less so in female patients. The many questions that this study raises, therefore, focus on the detail. What exactly were the problems? How were they before the onset of spondylitis? How are these problems perceived by the sexual partner? What relationships might there be between perceived sexual dysfunction and disease-related variables such as inflammatory activity? The nagging question still persists as to whether the responses of people with AS are really different from those of people who do not have this condition. If the advertisements for certain over-the-counter medications are to be believed, erectile dysfunction and less well-defined sexual problems are common, and hence perhaps men and women with AS might be just like the rest of the population.
To attribute unsatisfactory facets of life to known disease is always tempting, although even in much more clear-cut situations, being clear about cause and effect is extremely difficult. Ascribing causality is, like marriage, not to be entered into lightly. A way to help resolve some of these issues would be to make the same enquiries before highly effective treatment is introduced, such as a TNF blocker, and once a response has been achieved. Naturally, any improvement in function could reflect drug effects other than reduced activity of the disease, although no evidence of a direct aphrodisiac effect of TNF blockers has been observed so far.
The real message of this study, however, is much broader: recognition that a normal life is a real ambition for those with chronic disabling diseases and, therefore, a proper target for treatment. Whatever the small details, this study informs us that yet another facet, quality of life, is worse if you have AS, and that this is true for both men and women. Despite the image of AS as a relatively mild condition that may deform and cause some pain but otherwise impairs life to only a modest degree, we now know that this is not the case. Using instruments such as the SF-36, clearly, people with AS score poorly in all eight domains of quality of life compared with a healthy population [2–4]. Other means of assessing health-related quality of life and health utility show that AS compares closely with several other conditions including ischaemic heart disease and asthma, [5] which are generally perceived to have more serious outcomes. Moreover, the incapacity to work in AS–with all the associated psychological drawbacks–is comparable with that of RA [6, 7]. Individuals with AS are known to be less likely to marry, more likely to divorce and, for women, less likely to have babies [8]. There is now clear, if poorly quantified, evidence that AS grossly impairs quality of life in many domains. Sexual life, it now seems, is part of that impairment. Clearly, this is both another target for improvement and, potentially, another possible measure of treatment outcome.
The introduction of TNF-blockade therapy has led to immense relief in the impairment of health-related quality of life in AS. Although there is highly appropriate concern about the apparent failure of TNF blockers to halt progression of bony disease [9, 10], it is abundantly clear that treatment with these agents dramatically enhances well-being and that the measures of health-related quality of life substantially improve, irrespective of the measures used [11–13]. Clinicians who treat people who have AS with TNF blockers have first-hand experience of such effects, which so often seem more striking than in other conditions for which TNF blockade is effective.
Doctors often focus on skeletal damage and measures of pain, whereas most patients focus on feeling well and the ability to live a full life. So, when focus is directed towards the outcomes that are important to patients, Healey and colleagues’ study [1] is valuable. All the details of the study may be informative and the answers to the unanswered questions may be important, but the key implication is that if sex is important to people without AS then it is likely to be an equally important aspect of life for people with AS. Treatment should be based on recognition of what is important to patients, even if they do not like to discuss it, and aspects of their quality of life that are substandard.
A decade ago, this aspect would have hardly mattered, because whatever the effects AS had on the patient's life, it could only very modestly be influenced by treatment. But the dramatic changes to health-related quality of life and well-being associated with TNF blockade treatment have changed that. Patients are beginning to discover that what, after many years of chronic disease, seemed to be normal or acceptable is neither normal nor acceptable. By highlighting one aspect of impaired quality of life in people with AS, this study shines a light on the nub of a huge problem.
On the one hand, it is clear that improvement in the quality of life is a key achievement for some people with AS and a worthwhile objective for many more. On the other, no conclusive evidence is available to show that any treatment prevents structural damage or biological disease modification, but plenty of evidence about the substantial expense of the treatment. Is it really worth the risk of long-term biologic therapy at a cost of £10 000 ($16 447.52 or 
11 886.92) per year just to feel well and experience a quality of life that is comparable with and enjoyed by the rest of us? In RA, justification of biologic therapies has come to rest largely on the demonstrable prevention of joint damage, although other lifestyle benefits are acknowledged. In the absence of this tangible benefit, what then is the price of quality of life?
Adjudicating on the balance between costs of treatment and benefit is not principally the responsibility of doctors. However, providing the data on which that balance can reasonably be struck is. Restoring patients to a state of wellness and a quality of life that is comparable with that enjoyed by the healthy population may sound slightly old fashioned, smacking of spas and fresh air. In a cash-restricted health service, who would deny proven therapies to those with heart disease, cancer and varicose veins on the basis of transferring funds to gain such imprecise outcomes?
To simply believe that the benefits will be worth it is not enough. Some hard outcomes of anti-TNF treatment of AS are being rigorously explored: notably, issues related to employment and social support costs, and in due course need for surgery and other quantifiably expensive interventions will be measured. However, our understanding of health-related quality of life and the measurement and perceptions of its multiple facets is incomplete. So also is our understanding of the long-term implications as far as the outcomes of biologic treatment are concerned. Perhaps the quality-of-life benefits of current treatment will not last and will not protect people from personal and social decline over their life spans. For true personal and social costs along with the achievements of treatments of AS to be genuinely identified, the many facets of life that contribute to quality of life must be scrutinized. Even the sex lives of people with AS should be studied if they reflect aspects of the disease; what a pity that the study by Healey and colleagues does not inform us whether biologic treatment can reverse or ameliorate the problems recorded.
If the writings of Sigmund Freud and the contents of much pub chit-chat are correct, it would seem that the sex lives of most adults are important in the enjoyment of life, maintenance of close relationships and as measures of psychological health. This study may well have simply identified another pointer to impaired quality of life that is not currently measured by existing scales. It seems inherently unlikely that £10 000 worth of TNF blocker will be enough, in most cases, to correct all deficiencies associated with AS, but if we are trying to inform decisions about the true value of expensive forms of treatment then a patient's sex life, no matter how tricky a subject to evaluate, belongs in the balance pan along with prevention of syndesmophytes, improvement of work productivity and just feeling well.
Disclosure statement: A.K. has received honoraria for speaking at educational meetings and attending ad hoc Advisory Boards for Abbott, Schering-Plough and Wyeth. He is also in receipt of research funding from Abbott Laboratories Ltd.
References
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