Hre721.indd

Original Paper
RESEARCH
Accepted: July 11, 2006 Published online: August 31, 2006 Psychosocial Functioning, Self-Perception and
Body Image and Their Auxologic Correlates in
Growth Hormone and Oestrogen-Treated Young
Adult Women with Turner Syndrome
Katrien Lagrou a Christelle Froidecoeur a Francisca Verlinde a Margaretha Craen b Jean De Schepper c Inge François d Guy Massa a, e on behalf of the Belgian Study Group of Paediatric Endocrinology a Belgian Study Group of Paediatric Endocrinology (BSGPE), Departments of Paediatric Endocrinology, Universities of b Gent , c Brussels , d Leuven , and e Virga Jesseziekenhuis Hasselt , Belgium Key Words
plaints, thought problems, delinquent behaviour). TS pa- Adult ؒ Turner syndrome ؒ Psychosocial functioning ؒ Body tients did not differ from the non-TS female group in their image ؒ Oestrogen treatment ؒ Growth hormone treatment bodily satisfaction. TS patients, particularly patients with a 45,X karyotype, perceived themselves as less socially com-petent. BMI was significantly related to the appraisal score Abstract
of the Body Attitude Scale, whereas height was not related Background: Few data are available on the psychosocial sta-
to any of the evaluated psychosocial parameters. Conclu-
tus of growth hormone (GH) and oestrogen treated women sion: The psychosocial adaptation of young adult women
with Turner syndrome (TS). In this study, we evaluated psy- with TS, diagnosed at an early age and treated during child- chosocial functioning, self-concept and body image in GH hood with GH and oestrogens if indicated, appears to be and oestrogen treated young adult women with TS and we quite satisfactory. Follow-up of adult TS patients should not studied the relationship with auxological parameters. Pa-
neglect the problem of overweight and associated psycho- tients and Methods: Thirty women with TS (mean 8 SD
age: 22.1 8 2.4 years), all treated with GH and oestrogens if indicated, and an age-matched reference group of 44 non-Turner female students (age: 20.5 8 2.1 years) completed 3 questionnaires evaluating, respectively, behavioural and Introduction
emotional problems (Young Adult Self Report), self-concept (Self Perception Profile for College Students) and body-im- Turner syndrome (TS) is a genetic disorder caused by age (Body Attitude Scale). Results: TS patients did not report
the absence or structural abnormality of one X-chromo- more behavioural and emotional problems compared to the some, affecting approximately 1/2,000 females [1] . Al- non-TS females except for attention problems; they even re- though it has been well-established that adults with TS ported fewer problems on some subscales (somatic com- are susceptible to a large range of medical and psychoso- Department of Paediatric Endocrinology, Virga Jesseziekenhuis Tel. +32 11 309 864, Fax +32 11 309 898, E-Mail [email protected] cial problems [2, 3] , psychological studies in adult women Auxological and clinical data were collected from the ques- with TS report a large variability regarding psychosocial tionnaire and completed with data from the medical record. Stud- ied parameters were: karyotype, age and height at the start of GH adaptation and functioning [4–10] . Moreover, the effects treatment, duration of GH treatment, age and height at arrest of of height and height gain from growth hormone (GH) GH therapy, age at start of oestrogen therapy, age at menarche, treatment on psychosocial functioning still remain un- final height and BMI. Height and BMI data were expressed as clear [11–13] and the effects of oestrogen replacement standard deviation scores using the Flemish references [19] .
therapy have only been studied on self-concept and cog- The test scores of the TS patient group were compared to those of an age-matched (mean age: 20.5 8 2.1 years) reference group nitive abilities in adolescents [14–16] . Recent studies sug- of 44 female students (being trained in social work or nursing).
gest that adult height or height gain during GH therapy is not associated with quality-of-life scores, whereas old- er age at menarche and the lack of sex hormone replace- For the psychological evaluation, 3 standardized question- ment during adult life are major determinants of psycho- naires were used: behavioural and emotional problems were as-sessed by the Young Adult Self Report (YASR), self-perception by logical well-being [17, 18] . In addition, Carel et al. [17] the Self Perception Profile for College Students (SPP) and body found that the hearing status was a key predictor of image by the Bodily Attitude Scale (BAS).
health-related quality-of-life outcomes [17] .
The YASR is a questionnaire for young adults aged 18–30 years In the present study, we evaluated the psychosocial developed by Achenbach [20] . The Dutch version of Verhulst [21] functioning, the self-concept and the body image of was adapted to the Flemish language and the Belgian school sys- tem [22] . We also developed a French version [23] , both versions young adult women with TS treated during childhood with copyright permission of Achenbach and with back-transla- with GH and oestrogens, if indicated. In addition, we tion by an independent bilingual translator. The YASR contains studied the impact of several auxological parameters on a 119-item list of behaviours that might be problematic. Each be-these psychological parameters.
havioural item is rated as 0 for not true, 1 for somewhat or some-times true, and 2 for very true or often true. Higher scores indicate more problematic scores. This profile of behavioural problems can be interpreted by grouping the problem items into external- Patients and Methods
izing (consisting of intrusive behaviour, aggressive behaviour, and delinquent behaviour); internalizing (consisting of anxious/ depressed and withdrawn) and total problems and/or viewing the Young adult women with TS treated during childhood with ‘syndrome’ subscales, i.e., anxious/depressed, withdrawn, somat- GH by paediatric endocrinologists belonging to the Belgian Study ic complaints, thought problems, attention problems, intrusive Group for Paediatric Endocrinology were contacted in order to behaviour, aggressive behaviour, and delinquent behaviour. Re- ask whether they were willing to participate in a psychological sults were expressed as T-scores by comparison with the scores study. A first part of the study consisted of a mailed questionnaire obtained in a normative reference population [20] . Normalized concerning medical care, health and psychosocial status to be T-scores are assigned to the raw scores of a scale according to the filled in at home [3] . A second part comprised a psychological percentiles found for the raw scores in the normative sample. evaluation taking place in the hospital where they were previ- Mean 8 SD T-scores for the TS group and reference group were ously or currently followed. The study was approved by the local calculated, as well as the number of subjects with scores within ethical committees of the participating centres and written in- the clinical or pathological range (T-scores above 63 for the glob- formed consent was obtained from all participants.
al behavioural scores and T-scores above 70 for the subscale The inclusion criteria for the present study were: age between scores) and within the borderline or problematic range (T-scores 18 and 23 years, patients with induced puberty after completion between 60 and 63 for the global behavioural scores and T-scores of at least the third year of pubertal induction and patients with between 67 and 70 for the subscale scores).
spontaneous puberty at least 1 year after menarche. From the 102 The SPP was developed by Harter and Neemann [24] for the patients who completed the mailed questionnaire 70 (69%) re- ages 18–23 years and has been translated, adapted and back-trans- ported to be willing to participate in the psychological evaluation. lated into Dutch and French with permission of the author. This Forty-nine of these 70 patients fulfilled the inclusion criteria of questionnaire consists of 54 items subdivided into 12 subscales: age and puberty. At final inclusion, 30/49 patients (61%) effec- scholastic competence, intellectual ability, creativity, job compe- tively accepted to participate in the psychological evaluation: 9 tence, athletic competence, physical appearance, peer acceptance, patients could not be reached by phone or e-mail, 10 patients were close friendship, romantic relationships, relationship with par- not able or did not want to participate anymore mainly due to ents, morality and sense of humour. In addition, the SPP also taps changes in studies, working situation or residence.
global self-worth. Each of the content domains have four items per All patients were treated during childhood with biosynthetic subscale, while the self-worth subscale has six items. Each item human GH at a dose of 0.34 mg/kg/week administered as a daily describes two statements, one reflecting high competence, the subcutaneous injection. In the patients without spontaneous pu- other reflecting low competence. First the subject is asked which berty, puberty was induced with low doses of ethinyl estradiol kind of person he or she is most like; the subject then decides (EE2) (starting dose, 50 ng/kg/day) usually after at least 2 years whether that description is rather true or really true for him or of GH therapy alone and at a minimum age of 11 years.
her. Each item is scored from 1 to 4, where a score of 1 indicates low competence and a score of 4 reflects high competence. For Table 1. Auxological and clinical characteristics of the Turner pa-
each subscale the mean of the sum of the items is calculated.
The BAS is an originally Dutch questionnaire (‘Lichaams- belevingsvragenlijst’) constructed by Baardman [25] in 1989 and validated by Simis et al. [26] . Normative data are available for ages 12–22 years. We developed a French version by translating (and back-translation by an independent bilingual translator) the Age at diagnosis, years questionnaire from Dutch with permission of Koot. The BAS con- sists of 45 items and are scored on the basis of a five-point Likert scale. Appraisal, attribution and physical contact are the evalu- ated subscales. The appraisal factor includes items such as ‘Are you satisfied with the way your body looks?’ The attribution fac- tor includes items such as ‘Do you think people avoid you because of your appearance?’ The physical contact factor consists of items such as ‘In general, how much do you like being touched by some- body else?’ Raw scores go from a minimum of 45 to a maximum of 225, higher scores indicating a more positive bodily image. For each factor the mean of the sum of the items is calculated.
Auxological and clinical results are expressed as mean 8 SD. Test scores are expressed as T-scores (YASR) or as the mean of the sum of the items (SPP and BAS). For the YASR the number of pa- tients with T-scores within the borderline or clinical range was also calculated. Differences in test scores between TS patients and non-TS women were evaluated by the non-paired t test, or by the Chi-Square test or Fisher’s exact test as appropriate. In addition, a Of 26 patients who received EE2 treatment.
the results obtained in TS patients with 45,X karyotype were com- b At last visit means at the end of GH treatment or at final pared with those with another karyotype by the non-paired t test. A p value ! 0.05 was considered significant for inter-group com- c Current height and BMI are based upon patient’s report in parisons. For the TS patient group potential associations between test scores and auxological parameters were analysed by regres-sion analysis and expressed by the Pearson correlation coefficient. A p value ! 0.01 was considered as significant because of multiple testing. Statistical analysis was performed using SPSS software (version 13.0, SPSS Inc., USA).
m 2 (range: 17.2–46.7 kg/m2); 2 (7%) women were over-weight (BMI 1 25 kg/m2) and 4 (13%) were obese (BMI 1 30 kg/m2). Seventeen (57%) patients had a 45,X karyo- type and 13 had other karyotypes (45X,46 Xi(Xq): n = 8; 45X,46XY: n = 2; 45X,46XX,46,Xi(Xq): n = 1; 45X,46,Xi Characteristics of the Subjects and Treatment (Xq),47 Xi(Xq): n = 1; 46X,delXp: n = 1). The education- The auxological and clinical characteristics of the TS al level was rather high: 16 (53%) subjects had a diploma patients are shown in table 1 . The age at evaluation was of higher secondary education and 10 (33%) had a college 22.1 8 2.4 years. Puberty was induced in 22 patients, or university degree, whereas only 3 (10%) patients had a whereas 8 patients reported to have developed puberty diploma of lower secondary education and 1 patient re-spontaneously; 4 of them, however, needed oestrogen ceived special education. No differences in clinical and treatment to have complete pubertal development; 4 pa- auxological characteristics were observed among patients tients had spontaneous menarche. Menarche occurred at with induced or spontaneous puberty, neither among pa- the age of 15.3 8 1.2 years in patients with EE2 treatment, tients with the 45,X karyotype and those with other and at respectively 11, 13, 13, and 15 years in those with karyotypes.
spontaneous menarche. Twenty-nine of the 30 women were currently taking oestrogens.
Psychosocial Functioning (Behavioural and Emotional Final height was 152.6 8 4.4 cm (range: 145–161 cm). All TS patients had a height below the population mean The findings of the YASR are depicted in figure 1 A, B. (166.5 cm) and 20 (67%) patients still had a height below Both TS patients and the non-TS reference group had the third percentile (155 cm). BMI was 24.1 8 5.9 kg/ mean problem scores within the normal range. TS wom- Psychosocial Functioning of Young Adult Fig. 1. a Scores at the broad-band scales of
the YASR. The open bars represent the
scores of the non-TS females. * p ! 0.05. b Scores at the syndrome scales of the
YASR. The open bars represent the mean problem scores of the TS patients and the black bars the mean problem scores of the non-TS females. * p ! 0.05. en did not have more behavioural and emotional prob- scores on several syndrome subscales and on the 3 lems compared to the non-TS females. On the contrary, broad-band scales. Significantly more TS patients com-TS patients had lower (less problematic) scores than the pared to the non-TS group had attention problem scores reference group on several subscales, i.e . somatic com- within the borderline range (7/30 (23%) vs. 2/44 (5%), plaints (54.3 8 6.8 vs. 57.8 8 6.6, p = 0.03), thought prob- lems (51.6 8 4.9 vs. 55.4 8 8.2, p = 0.02), and delinquent When taking into account the karyotype, patients behaviour (52.1 8 2.9 vs. 55.1 8 5.8, p = 0.01), as well as with 45,X karyotype had more problematic scores than on the broad-band externalizing scale (49.7 8 9.7 vs. 54.7 patients with other karyotypes only on the withdrawal subscale (61.3 8 10.6 vs. 54.3 8 7.0, p = 0.049).
Table 2 shows that, when considering the number of subjects with deviant behavioural problems scores, i.e. YASR T-scores within the borderline or clinical range, a The results of the SPP are shown in table 3 . TS patients considerable number of TS patients, as well as of the had scores comparable to those of the non-TS reference non-TS reference group had problematic or pathological group on the majority of subscales, including intellectual Table 2. Number of subjects with problematic scores at the Young
Table 3. Scores at the Self Perception Profile (SPP)
* p < 0.05; ** p < 0.02; *** p < 0.01.
Table 4. Scores at the Bodily Attitude Scale (BAS)
Table 4 shows that with respect to body image as measured by the BAS, TS patients’ bodily attitude scores were comparable to those of non-TS women for apprais- al, attribution as well as for physical contact. On the BAS, no significant differences were found between pa-tients with the 45,X karyotype and those with other karyotypes.
ability, athletic competence, physical appearance and global self-worth. In comparison with the reference Correlations between Test Scores and Auxological group, TS women had lower scores for social acceptance (2.7 8 0.7 vs. 3.0 8 0.6, p ! 0.05), romantic relationships No associations were found between the YASR and (2.1 8 0.7 vs. 2.5 8 0.6, p ! 0.05) and sense of humour SPP scores, and height or BMI. With respect to the BAS, (2.6 8 0.7 vs. 3.1 8 0.7, p ! 0.01), and higher scores for only a negative correlation was found between BMI and morality (3.2 8 0.4 vs. 3.0 8 0.4, p ! 0.02).
the appraisal score (r = –0.51; p ! 0.01). None of the test Patients with the 45,X karyotype had lower scores scores was related to the ages at start of GH therapy, at than those with other karyotypes for close friendship (2.7 start of oestrogen therapy or at menarche.
8 0.7 vs. 3.3 8 0.7, p ! 0.05), romantic relationships (1.9 8 0.6 vs. 2.4 8 0.7, p ! 0.05) and sense of humour (2.4 8 0.6 vs. 2.9 8 0.6, p ! 0.05).
Psychosocial Functioning of Young Adult Discussion
list in girls with TS, which remained unchanged during GH therapy [11] . The presence of attention problems in This psychosocial evaluation of young adult women TS patients is a well-known feature already present at a with TS reveals that these women have similar scores as very young age and being part of a larger cognitive-be-age-matched women without TS with respect to most of havioural profile. Attention problems can be associated the assessed domains. Although the TS patients in our with problems of hyperactivity, distractibility, clumsi-study had been treated during many years with GH and ness and/or poor school performance. Several authors re-oestrogens, they all had an adult height below the popula- ported a TS specific neurocognitive phenotype consist- tion mean, and two-thirds of the patients still had a height ing of impaired visual-spatial and visual-perceptual abil- below the third percentile. Hence, short stature does not ities, motor function, non-verbal memory, executive seem to affect psychosocial well-being at adulthood very function and attentional abilities [6, 27–31] .
much.
Patients with the 45,X karyotype had more problem- We decided to compare the data of our TS patient atic scores for withdrawal than patients with other karyo- group with the data of an age-matched group of non-TS types. This might be due to the fact that patients with female students, which we consider as a reference group other karyotypes usually have fewer or less severe TS and not as a control group. Ideally, the results obtained in symptoms and/or dysmorphic features impeding social our TS group should be compared with data obtained in contact [32] . Further studies are needed to verify this hy-non-GH treated TS patients, but this was not feasible pothesis.
since we could not trace enough age-matched untreated Regarding self-perception, TS patients had self-per- TS patients to serve as a control group. We acknowledge ception scores comparable to the reference group on the that this is a shortcoming of the present study. As a con- majority of subscales except for social acceptance, ro- sequence, our results can only be extended to TS patients mantic relations and sense of humour, globally in line who have been diagnosed rather early in life and have with the Dutch results [13] , but somewhat in contrast to been treated with GH and oestrogens.
other previous studies reporting impaired self-esteem With respect to the presence of behavioural and emo- and self-confidence [4, 6, 27, 29] . Problems in social rela- tional problems, TS patients had similar scores as the ref- tionships, particularly in contact with the opposite sex, as erence group on the majority of syndrome subscales and reflected by a lesser number of intimate relationships or even less problematic scores on some subscales (somatic marriages, later psychosexual milestones, problems with complaints, thought problems, delinquent behaviour) social cues have repeatedly been reported [4–9, 18] . Our and on the broad-band externalizing scale. Our findings TS patient group had a lower sense of humour, which are globally in line with the YASR data reported by van could be understood within the context of a lack of self-Pareren et al. revealing comparable behavioural confidence in social relations as well as a lack of good problem scores between TS women and the general pop- understanding of social, especially affective, cues [28] . ulation. However, their results were only based upon the Our TS patients had higher scores for morality than the broad-band scales. It is somewhat surprising that our TS non-TS reference group. These higher morality scores patients had lower scores on the somatic complaints sub- could be seen as a way of compensation or coping, attach- scale than the non-TS reference group as TS patients are ing more importance to or accentuating internal values often confronted with TS specific health problems [2, 3] . rather than external values such as physical appearance. This may be due to the fact that the YASR somatic com- Among the TS group, patients with the 45,X karyotype plaints subscale does not measure TS specific somatic had lower self-perception scores with respect to social problems such as hearing problems, cardiac disease, hy- contact and sense of humour than TS patients with other pothyroidism or hypertension. In addition, TS patients karyotypes. A similar interpretation as mentioned above have experience in adapting to these health problems, could be applied, i.e. patients with a 45,X karyotype hav-and probably tend to complain less about their body than ing more pronounced TS symptoms [32] could experi- ence more problems in social relations.
Significantly more TS patients than reference women The satisfaction of the TS patients with body image received scores on the YASR attention problems subscale and/or female appearance was not different from that of within the borderline and clinical range. In line with oth- the non-TS females, with similar bodily attitudes scores ers [27] , we previously reported elevated scores on the at- for appraisal, attribution as well as physical contact on the tention problems subscale of the Child Behaviour Check- BAS, and comparable scores on the physical appearance subscale of the SPP. The Dutch study reported a more ings such as different treatment regimens (late pubertal negative body image in the TS group compared to the induction, no oestrogen treatment at adult age), the choice population sample, but BAS attribution and physical con- of the studied somatic and psychological parameters, and tact scores were only slightly lower [13] . We suspect that age differences of the studied TS patients impeding a val-the non-problematic bodily attitudes scores in our TS id comparison of data from different publications.
group could be due to defence and/or coping mechanisms such as a tendency of minimization and denial of prob-lems with respect to physical appearance or femininity. Conclusions
Since the TS specific physical characteristics and/or dys-morphic features cannot be treated or changed essential- In conclusion, our findings revealed that young adult ly, a way of coping, a way of adapting to this reality is try- patients with TS, diagnosed at an early age and treated ing to minimize the importance of physical appearance during childhood with GH and oestrogens if indicated, and to accentuate the importance of other aspects in did not report more behavioural and emotional problems life.
compared to age-matched non-TS women except atten- When analyzing the potential somatic and clinical tion problems. TS patients even reported fewer problems correlates of the psychological test scores in the TS pa- than non-TS females at some subscales. Although TS may tient group BMI, reflecting obesity, a common problem have an important impact on physical appearance, TS pa-in adult TS [2, 33] , was a more important determinant tients did not differ from non-TS women in their bodily than height. Bodily attitudes scores on the appraisal sub- satisfaction. In line with previous studies, TS patients scale of the BAS were inversely related to BMI, i.e. lower perceived themselves as less socially competent, particu-bodily appraisal scores were related to a higher BMI. Oth- larly patients with a 45,X karyotype. BMI was the only er clinical determinants such as height, age at start of GH somatic correlate related to the bodily attitudes scores. therapy, age at start of oestrogen therapy and age at men- The medical and psychological follow-up of adult TS pa- arche were not related to any of the test scores.
tients should not neglect the problem of overweight and Our findings are in line with those from other studies associated psychosocial consequences.
demonstrating that height does not have a significant im-pact on psychological functioning [9, 13, 17, 18] . For oth-er somatic correlates discrepant results were found. In Acknowledgements
contrast to our findings, Wide-Boman et al. [18] reported that BMI was not related to psychological well-being. This work was supported by a research grant from the Belgian Some studies demonstrated that late induction of puber- Study Group for Paediatric Endocrinology. The authors express ty and health problems associated with TS (hearing im- their thanks to all the members of the BSGPE who invited patients to participate to this study. Part of this work was previously pub- pairment and cardiac problems) had a negative impact on lished in abstract form [Horm Res 2005;64(suppl 1):211] and was quality of life or well-being [17, 18] . A complex interplay presented as a mini poster at the ESPE/LWPES 7th Joint Meeting of factors is probably responsible for these divergent find- Paediatric Endocrinology, Lyon, september 2005.
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