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Context: Pediatric management of patients with Turner syndrome focuses on height, frequently resulting in a delay of pubertal induction. The influence of pubertal management on psychosocial adjustment and sex life has not been evaluated in Turner syndrome patients. Objective: The objective of the study was to identify the determinants of self-esteem, social adjustment, and initiation of sex life in patients with Turner syndrome, particularly those related to pubertal management. De: This was a prospective evaluation, the StaTur study. Setting: The study was conducted with a population-based registry of GH-treated patients.
Participants: Participants included young adult women with Turner syndrome, aged : Low self-esteem was associated with otological involvement and limited sexual experience. Low social adjustment was associated with lower paternal socioeconomic class and an absence of sexual experience. Late age at first kiss or date was associated with cardiac involvement and a lack of spontaneous pubertal development. Age at first sexual intercourse was related to age at puberty and paternal socioeconomic class. Delayed induction of puberty had a long-lasting effect on sex life.
Height and height gain due to GH treatment had no effect on outcomes. Therapeutic interventions altering normal pubertal development in other groups of patients should be reconsidered in light of these findings. The principal features of Turner syndrome are short stature, dysfunctional gon, cardiac and renal malformations, otological problems leading to hearing impairment, and dysmorphic features of various severities. Treatment has focused on height 4. GH treatment increases adult height, as shown by a randomized controlled study 5 , confirming earlier reports 6 , 7.
However, the height gain is quite variable and its clinical ificance is a matter of debate 8. Pubertal development must be induced by drug treatment in girls with Turner syndrome presenting primary ovarian failure. Many studies have considered the effects of this management of puberty on height 9 , 10 , but little is known of its effects on the initiation of sexual activity and its impact on psychosocial functioning. As for all chronic diseases of childhood, the medical treatment of Turner syndrome should aim to reduce the impact of this condition on psychosocial functioning, in both childhood and adulthood.
However, the impact of management on psychosocial outcomes has not been systematically evaluated for Turner syndrome. In a study, we observed that health-related quality of life was similar in adult women with Turner syndrome treated with GH in childhood and the general population We identified several components of the disease or consequences of medical management as factors associated with low health-related quality of life scores: cardiac and otological involvement, induction of puberty after the age of 15 yr, and higher expectations from GH treatment.
In contrast, height or height gain from treatment had no influence Other aspects of psychosocial functioning, such as self-esteem and social adjustment, have not been systematically evaluated in patients with Turner syndrome 12 — It is therefore important to analyze the influence of management options in childhood on these dimensions to help pediatricians make the best choices concerning the management of their patients.
The factors determining the onset of sexuality in humans are poorly characterized, and attention has mostly focused on behavioral, environmental, and psychosocial determinants The timing of puberty affects the onset of sexuality in the general population 16 — Several medical interventions affect the timing of puberty, but their effects on sexual behavior have not been studied 19 , Estrogen replacement in hypogonadal girls has a modest short-term effect on sexual behavior Therefore, Turner syndrome, in which puberty is medically induced in most cases, provides a model to investigate the influence of the timing of puberty on the onset of sexuality.
In this study, we evaluated self-esteem, social adjustment, and sexuality, together with their determinants, in a population-based cohort of Turner syndrome patients treated with GH in France. The de of the study has been described in detail elsewhere 9 , The StaTur cohort includes all patients with a diagnosis of Turner syndrome diagnosed on karyotype analysis who were treated with GH in France during the study period — and were obligatorily registered in the Association France-Hypophyse database.
The Association France-Hypophyse database is nominative, which allowed mailing the questionnaires. A coded identifier was included to medical data exported to the study database and the questionnaires. Data from the questionnaire were entered in the database with the coded identifier but without the personally identifying information, allowing us to keep this confidential information anonymous. The patients were informed that the database and data analysis were anonymous, although the questionnaires included a coded link to their identity and clinical data.
Data relating to features associated with Turner syndrome, growth, and treatments were collected throughout childhood and adolescence 9 , In , a postal questionnaire was sent to all patients older than 18 yr on March 31, It also dealt with demographic characteristics, current health status morbidity, medication , sexual experience, and expectations from GH treatment.
The SEI contains 58 trait-descriptive sentences to which subjects respond by indicating whether the sentences describe them. Scoring is based on a item general subscale and on three 8-item subscales evaluating self-esteem in the social, family, and working areas. The total SEI score is the sum of the four subscales and ranges between 0 and Higher scores indicate higher self-esteem. The SAS-SR questionnaire consists of 54 questions measuring instrumental and communicative role performance over the past 2 wk. It includes questions on work, social and leisure activities, relationships with family, marital partner, children, and perception of economic functioning.
Each item is scored on a 5-point scale with higher scores indicating lower social adjustment. The first, called lifetime sexual experience, classified women as having: 1 no experience of kissing or dating; 2 kissing or dating experience but no experience of intercourse; 3 experience of sexual intercourse but no experience of living with a male partner; or 4 experience of sexual intercourse and currently living with a male partner. The second variable, sexual intercourse experience at the age of 20 yr, took into the age of participants with its obvious effect on sexual experience. We quantified the relationships between subscores for the SEI and SAS-SR questionnaires, clinical and demographic characteristics, and sexual experience by means of univariate linear regression.
Variables identified as ificant in this univariate analysis were then included in a multiple regression model with a backward selection procedure Sexuality was analyzed by means of survival analysis, using first kiss or date or first sexual intercourse as the event considered. Given that events had not occurred in all women, we used age at time of the survey as censored time for these observations. Survival curves were derived from Kaplan-Meier estimates Multivariate analyses used the Cox proportional hazards regression model 30 , with a backward stepwise selection procedure.
The flow chart describing enrollment of patients is presented in Fig. Details on GH treatments and height outcomes have also been described earlier 9 , Women with Turner syndrome had low SEI scores, particularly for the general and social scales. Pubertal onset was defined as the time of spontaneous breast development or initiation of sex steroid treatment.
Pubertal onset was medically induced in patients at Of these patients, 61 required sex steroids later, for pubertal development to complete. The mean BMI was Given the small of participants with a partner or children, the corresponding SAS-SR scores were not analyzed. Five of the 38 variables tested were retained in the multivariate models Table 2. Otological abnormalities were associated with low self-esteem in all but one dimension work. Lifetime sexual experience was associated with the overall SEI scale and two of the four SEI subscales, with scores increasing with sexual experience.
Earlier menarche was associated with lower self-esteem for the work dimension only, but age at onset of puberty B2 stage was not a predictor of SEI scores. Several variables were not associated with SEI scores. Predictors of SEI scores were categorized. are expressed as absolute scores relative to a reference category set to zero. correspond to final multiple regression models explaining each score in columns ; for instance, the mean general score being Eight of the 38 potentially explanatory variables tested were retained in the multivariate models Table 3.
As expected, socioeconomic variables influenced social adjustment. Older participants had lower scores on the family scale. Categorical GHQ score was correlated with all dimensions of social adjustment. Otological involvement had a minor effect. In contrast to what was observed with the SEI scale, increasing sexual experience had no effect, suggesting an all-or-nothing effect of kissing or dating.
Interestingly, women over the age of 20 yr at the time of the survey who had never had sexual intercourse or who had begun their sex lives late had higher scores on the work scale. These variables included adult height or estimated height gain, dysmorphic features, age at menarche, karyotype, cardiac involvement, genital malformations, size of the center, type of estrogen used, and delay to progestin treatment.
correspond to final multiple regression models explaining each score in columns. Because sexuality was found an important determinant of self-esteem and social adjustment, we constructed Kaplan-Meier curves for the occurrence milestones in the development of sexuality Figs. In univariate analysis, age at first kiss or date was associated with age at the onset of puberty, induced vs.
In the final multivariate Cox model, induced as opposed to spontaneous puberty [hazard ratio HR 0. Age at first kiss or date was not associated with paternal socioeconomic class, dysmorphic features, adult height, or BMI. Age at first kiss or date in women with Turner syndrome. The rate of event-free survival the proportion of women with no experience of a first kiss or date is shown and subdivided according to predictors ificantly associated with events in the final multivariate Cox model see text.
A, Kaplan-Meier survival curves according to the type of puberty. B, Kaplan-Meier survival curves according to the presence of cardiac involvement. Age at first sexual intercourse in women with Turner syndrome. The rate of event-free survival the proportion of women who have not yet had sexual intercourse is shown and subdivided according to predictors ificantly associated with events in the final multivariate Cox model see text. A, Kaplan-Meier survival curves according to paternal socioeconomic class.
B, Kaplan-Meier survival curves for participants subdivided upper or lower half of the distribution according to age at initiation of puberty, defined as appearance of B2 stage or initiation of estrogen treatment. In univariate analysis, age at first intercourse was associated with age at onset of puberty and paternal socioeconomic class. In the final multivariate Cox model, lower paternal socioeconomic class [manual worker vs.
Age at first intercourse was similarly associated with age at menarche but was not associated with heart involvement, type of puberty, dysmorphic features, adult height, or BMI. This is the first study to investigate the factors influencing self-esteem, social adjustment, and sexuality in a population-based cohort of women with Turner syndrome. Its indicate that, in young women with Turner syndrome: 1 otological involvement and limited sexual experience are associated with lower self-esteem; 2 lower paternal socioeconomic class and an absence of sexual experience are associated with poorer social adjustment; 3 age at first kiss or date is related to the spontaneous occurrence of puberty and the presence of cardiac abnormalities; and 4 age at first sexual intercourse is related to age at puberty and paternal socioeconomic class.
Our study has implications for the management of patients with Turner syndrome, pubertal disorders, and, more generally, chronic illnesses of childhood. Self-esteem was found to be low in several clinic- or support group-based samples of patients with Turner syndrome 31 , However, these studies were not population based, included patients from a wide range of age groups without taking age into , and did not analyze factors associated with self-esteem and those related to pediatric care in particular. Ross et al. This may for our finding no effect of age at the onset of puberty on self-esteem.
We demonstrated that otological involvement was a major, unrecognized factor affecting self-esteem, suggesting that ear infections during childhood should be aggressively managed. The other main factor associated with self-esteem was sexual experience, which increased self-esteem. Overweight was associated with lower self-esteem as also reported in the non-Turner population The strong association between GHQ scores and self-esteem illustrate the fact that psychological distress and self-esteem are strongly interrelated.
Inclusion of GHQ scores in the explanatory models of self-esteem determinants allowed us to adjust for the level of psychological distress and decrease the risk of false-positive relationship in the multivariate analysis. clinic-based studies based on small samples have reported that Turner syndrome patients have a limited social life, with satisfactory adjustment to this situation. A high proportion of older individuals with Turner syndrome are reported to hold university degrees and be employed below their academic level 2 , 3.
We found that sexual experience affected social adjustment, but, in contrast to what was observed for self-esteem, kissing or dating experience had an all-or-nothing effect. Sexual experience before the age of 20 yr was negatively associated with social adjustment at work, even after adjustment for educational level. Similarly to self-esteem, inclusion of the GHQ score in the models allowed to adjust for the level of psychological distress.Sex dating in Turner center
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