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Why Measure Outcome in Transsexualism?

Dr. Russell Reid,

M.B.Ch.B., F.R.C.Psych., Consultant Psychiatrist, London
Gendys Conference, 2002

 

 
The crucial question is how do we know that our patients get better?

The aim of an outcome study is to measure what matters to patients and reflect the priorities of clinical care. The outcomes that matter fall into three categories:-

  1. Symptom change,
  2. Quality of life - the patients get jobs and decent places to live?
  3. Satisfaction with the care provided for patients and their families.

Outcomes need to be measured in a way that is part of clinical care, not a tiresome extra or even as a research project. And the information has to be useful. A pilot study will help us get the practicalities and the usefulness right.

The benefits should be numerous. Staff will have evidence of a job well done. Services will be responsive to patients needs. As well it should be possible to show that a particular model of treatment leads to improvements in patient health and well being, and social adjustment.

The outcome measures should be straightforward, relevant and easy to apply with a one-page questionnaire able to be completed a minute or two by either or both the patient or doctor. Questions should include items such as social adjustment and current physical and psychological health:-

  1. Single or in a relationship?
        Companionate or physical/sexual?
       With a man, woman or Trans person?
       Live-in or not?
  2. Employed or retired or unemployed and on benefits?
  3. Earning more or less than in previous gender role?
  4. In touch with and on good/bad terms with parents/children.
  5. Social network with friends or socially withdrawn and reclusive?
  6. Confident and in good spirits or depressed and on antidepressants?
  7. Satisfied with the outcome of GRS in terms of cosmetic appearance, depth/function and sensitivity? Did GRS come up to expectations? If not, why not?
  8. Adequacy of medical and psychiatric follow-up?
  9. Post-op HRT; endocrine status and problems, if any.
  10. Regrets?
        a: Serious enough to consider reverting to original gender role? Or,
        b: Serious enough to consider reversal of GRS?
  11. Ongoing medical, surgical, psychiatric or social problems? Such as further laser or electrolysis required, facial feminisation surgery, breast augmentation, speech therapy, grooming therapy, psychotherapy etc.

Outcome Studies - the Literature.

I refer to a paper written by Dr. Friedemann Pfafflin, a psychiatrist at Ulm University Clinic in Germany, Regrets after Sex Reassignment Surgery, in which he summarises data from follow-up literature of the last 30 years, as well as his own clinical data on nearly 300 men and women after GRS. He estimated the number of patients who regretted having surgery. Rather surprisingly they amount to less than 1% in Trans men, and 1-2% in Trans women.

Poor differential diagnosis, failure to carry out the 'real-life test', and poor surgical results seem to be the main reasons behind the regrets reported in the literature.

Clearly we are dealing with a very small minority of transsexuals who after undergoing GRS regret doing so, but of course since the operation is not reversible, regrets are a tragic outcome.

So far, there have been two studies which have investigated regrets within larger samples.

Walinder et al. in 1978 found that out of 100 Trans persons, only three Trans women and one Trans man regretted changing gender role, changing their names legally (which is apparently quite difficult in Sweden) and starting hormones. However none had undergone GRS, and so presumably they reverted to their former role, and got along with their lives

Blanchard et al. in 1989 investigated 61 Trans women and 50 Trans men after GRS, and asked two questions:
   1. If you have had a vaginoplasty or mastectomy how you feel about this operation now? And,
   2. At the present time, do you feel that you would rather live as a man or a woman?

While none of the Trans men showed regrets, four Trans women did so. However none of them had fully reverted to their former gender role.

Regret, in this study was defined as gender dysphoria in the new gender role and after GRS which is expressed in behaviour, i.e., attempts at reorientation in gender role behaviour and/or readoption of the former sex/gender-role behaviour and/or applications for legal name/gender change and/or attempts to have GRS reversed.

Regrets in two Trans women (Walinders study)
   One underwent a religious conversion.
   One developed a paranoid psychosis and committed suicide.
   Neither had had GRS.

Two other patients returned occasionally and temporarily to their former male behaviour, one being threatened with the loss of his claim to a large inheritance and an aristocratic title if he showed up as a woman.

Factors contributing to regrets:

  1. Co-morbidity (i.e. mainly personality disorder and substance abuse).
  2. The extent to which the 'real-life test' has been successfully carried out.
  3. The quality of surgical outcome.

At least four patients developed psychoses or paranoid reactions. One patient had a history of violent criminal behaviour, was alcoholic, had cut his penis with a razor blade, and later castrated himself, and finally by threatening suicide coerced the surgeons in carrying out the vaginoplasty.

At least three patients had not even attempted the 'real-life test' and were operated on without having any experience as to how life as a woman would be.

Poor surgical outcome includes:-

  1. Unsatisfactory cosmetic appearance,
  2. Recurrent urinary tract infections.
  3. Persistent pain, infection or abscess formation,
  4. Recto-vaginal or urethral-vaginal fistula,
  5. Vaginal prolapse or partial prolapse,
  6. Inadequate vaginal depth.

Some, indeed most of these complications are correctable medically and surgically, but coming to terms with long-term invalidity stresses the most resilient. Obviously the more serious complication, the more psychological and social difficulties will result. Depression follows with social isolation and withdrawal, diminished self-esteem and confidence and the seeds are sown for a sad and lengthy career as psychiatric patient with chronic psychological disability. And these days you won't be looked after in a psychiatric hospital or nursing home.

Social factors associated with poor outcome:

The family background was significant in three of 196 Trans women. They came from dysfunctional families with either broken homes, the early death of father or mother, or divorce or remarriage of parents, or parents who reacted negatively to having a Trans-gendered child. The trauma associated with separation played a central role in all three biographies. All three had long-lasting relationships with women, and none had had any sexual experience with a male before GRS.

Treatment factors associated with poor outcome:

All three patients had completed a successful 'real-life test' of between one and four years prior to GRS, but none of them had been seen regularly by a psychiatrist. Two had been in regular treatment with psychologists and psychotherapists but for less than ten months. One of them attended group sessions with a psychologist which was characterised as "superficial conversation." Hormonal treatment had been started by two of the patients without seeing a doctor.

Underlying psychopathology associated with poor outcome:

In the language or psychoanalysis, analysing the object-relations of unsuccessful Trans persons suggests a predominantly sado-masochistic structure, but without any overt sado-masochistic sexual behaviour. Ego structure is fragile and defence mechanisms labile. In periods of distress two of the patients resorted to drug and alcohol abuse which together with severe anxiety suggested a borderline personality structure. After two to six years of having lived successfully as women, all three Trans women returned to their former gender role behaviour when their partners threatened or actually left them, suggesting deep-rooted separation fears.

Significantly, while they regret GRS they are convinced they did not have any alternatives when they underwent surgery. They describe it has a necessary step in their development which has given them insights they otherwise would never have achieved. In other words it seems they had "exorcised their gender demons."

Walinder identified 13 unfavourable prognostic factors:

  1. Psychotic reactions,
  2. Mental retardation,
  3. Unstable personality,
  4. Alcoholism/drug addiction,
  5. Criminality,
  6. Inadequacy in self-support,
  7. Inadequate support from family,
  8. Excessive geographical distance to treatment unit,
  9. Physical build inappropriate to the new gender role,
  10. Completion of military service,
  11. Heterosexual experience (in their original gender-role).
  12. Strong sexual interest (high libido),
  13. Higher age at request for intervention.

In cases where the patients regretted the operation they found on average 7 to 8 such items, as opposed to the group of patients with favourable outcome, on average 2. (Range 1 to 7). This difference is statistically significant.

Clinically it seems that transsexual patients suffer many forms of minor regret after GRS. Pain during or after the operation, surgical complications, poor surgical results, loss of partners, loss of job, conflicts with families, disappointments that various expectations linked to GRS were not fulfilled - there are countless reasons for regrets. Usually such regrets are temporary. Most of them are realistically overcome after some time with or without the help of counsellors. The definition of regrets as used in this paper does not apply to these forms of minor regret. As Kuiper and Cohen Kettenis (1998) have shown, quite a few post-operative Trans women suffer from various kinds of dysphoria, just as other people do, yet they no longer attribute their dysphoria to gender dysphoria. The number of lasting regrets, which are attributed to gender dysphoria and expressed in behaviour, is small.

In Trans man who seem to be a diagnostically more homogenous group, regrets are less than 1 percent. In Trans women they range between 1 to 1.5 percent.

However one explains the causes of transsexualism, it seems obvious that there is a continuum from sporadic episodes of gender dysphoric thoughts to stable cross gender identification in terms of experience and behaviour. This supports the notion that transsexualism is a means of adapting to one's gender dysphoria in order to alleviate it. Psychiatric diagnosis and treatment aims primarily at distinguishing between those cases where, in all probability, hormonal and surgical treatment will further stabilise the patient, and those cases where it will not.

One way of avoiding regrets is to adhere to the 'Standards of Care' laid down by the Harry Benjamin International Gender Dysphoria Association, now in its sixth version, (2001). Note that these guidelines suggest an individualised treatment plan allowing for a fair degree of flexibility and individual variation.

Conclusions.

  • Valid outcome studies are still necessary to confirm that the current strategy of treatment with Hormones - Real-life Experience - GRS is appropriate and may even be life-saving for the vast majority of correctly diagnosed Transsexuals.
  • The evidence to date strongly suggests that 'Quality of Life' improves in Transsexuals when such staged treatment is implemented, and deteriorates when it isn't.
  • The apparent increase in the incidence of the 'Transsexual Syndrome' in recent years is undoubtedly a result of increased public awareness of the subject from the media, especially Television and the Internet. Also well publicised legal battles have been won in relation to employment rights. Not before time, legislation will soon be enacted giving full legal rights for (post-operative)Trans persons to amend their birth certificates to allow legal marriage and adoption of children etc.
  • Gender Activists in Press for Change working alongside the Parliamentary Forum as well as Bernard and Terry Reed from GIRES, have been steadily achieving their goals and continue to 'Press for Change'. Dr Joyce Martin has produced the 6th draft of Guidelines for GP's to monitor the health and the safe use of hormones of Transpersons.
  • These are major changes which make it all the more important for outcome studies to continue to provide ongoing evidence that the currently accepted management of the Transsexual Syndrome works and works well.
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Citation: Reid, R., (2002), Why Measure Outcome in Transsexualism? GENDYS 2002, The Seventh International Gender Dysphoria Conference, Manchester England.
 
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