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doi:10.1111/j.1440-1754.2008.01428.

ORIGINAL ARTICLE

Referrals for tall stature in children: A 25-year


personal experience
Michael J Thomsett
Department of Endocrinology, Mater Children’s Hospital, South Brisbane, Queensland, Australia

Aim: Extreme tall stature may lead to a variety of concerns in tall children and their parents, leading to requests for treatment to reduce final
height in some children. This study reviews referrals for tall stature to a single pediatric endocrinologist and results of treatment over 25 years
from 1980 to 2004.
Methods: Diagnoses, heights, target heights and estimated final heights at presentation, and final heights and complications in treated
patients, were examined by retrospective chart review.
Results: Of 345 referrals, 244 (71%) were girls and 101 (29%) were boys. Of the 68 (19.7%) treated, 53 (78%) were girls and 15 (22%) were boys.
Most children had familial tall stature. Treated children were tall for their already tall families. Treatment reduced final heights compared with
estimated final heights by (mean +/- standard error of the mean) 4.2 +/- 0.5 cm (P = 0.001) in girls and 5.1 +/- 0.8 cm (P < 0.001) in boys. Minor
complications occurred in 27 (51%) girls, including 5 (9.4%) who stopped treatment because of weight gain, and 5 (33%) of boys. In more recent
years, girls (but not boys) presented less frequently, were taller at presentation and opted for treatment less often, and at taller estimated final
heights than in the earlier years.
Conclusions: Any benefits of high-dose sex steroid treatment of tall children in terms of reduced final height and improved self-image are at
the expense of complications in many. Fewer tall girls being referred and treated probably reflects altered attitudes to tallness in society. Such
treatment should seldom – if ever – be used in the future.
Key words: attitudes; final height; tall stature; temporal changes; treatment.

Introduction during adolescence being a factor.1 Such concerns have led to


attempts to limit final height (FH) by high-dose sex steroid
Concerns reported by tall children and their parents have treatment.
included social unattractiveness, feeling different, being teased, Of the many reports of treatment for tall stature since the first
withdrawing socially, and perceived or predicted difficulties in in 1956,2 few have documented the experience of a single
finding partners and in purchasing clothes. Women who were as clinician. Such individual experience allows for consistency in
tall as adolescents have a higher prevalence of major depression clinical approach to the problem and in the advice given to the
than the general population with self-reported difficulties family and the patient. This consistency ensures that any
changes in treatment patterns over time are not because of
Key Points conflicting advice from different clinic members. Reported here
are the results of 345 referrals for tall stature to the private
1 High-dose sex steroid treatment significantly reduces final
paediatric endocrinology practice of the author in Brisbane,
height in tall children.
Australia over 25 years, and the results of treatment of 68
2 Changes over the 25 years of this study in referral numbers,
(19.5%) of the children.
heights at which referrals were made, and estimated final
heights on which the families opted for treatment indicate pro-
found alterations in attitudes to tall stature over that interval, Materials and Methods
particularly in girls.
Between January 1980 and December 2004, the author con-
3 Any benefits in terms of reduced final height and improved
ducted paediatric endocrinology clinics in the two teaching
self-image are at the expense of short- and long-term complica-
children’s hospitals in Brisbane, Australia and in a private prac-
tions in many. Such treatment should seldom, if ever, be used in
tice, geographically separate from the hospitals. Only patients
the future.
referred by their family physicians or by other pediatricians
were seen. From 1996–1997, other paediatric endocrinologists
Correspondence: Dr Michael Thomsett, Department of Endocrinology, also attended the hospital clinics, potentially leading to the
Mater Children’s Hospital, Stanley Street, South Brisbane, QLD 4101, inconsistency of clinical approach and advice to families and
Australia. Fax: +61 73163 1744; email: mthomsett@bigpond.com
patients. Therefore, only patients referred to the private practice
Accepted for publication 12 July 2008. are reported here.

58 Journal of Paediatrics and Child Health 45 (2009) 58–63


© 2008 The Author
Journal compilation © 2008 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
MJ Thomsett Referrals for tall stature in children

All interviews, measurements, examinations, bone-age read- Results


ings and estimations of FH (EFH; by the Bayley–Pinneau
method), diagnoses and discussions were performed by the Patients referred
author. Consistent information was given to families and
Over the 25 years, 345 children were referred for tall stature,
patients regarding the diagnosis, limitations of the EFH, details
including 244 (70%) girls and 101 (30%) boys. Diagnoses made
of treatment protocols, and potential advantages and disadvan-
were familial tall stature (FTS) (85%), Marfan syndrome (4%),
tages of high-dose sex steroid treatment for non-disease (i.e. tall
constitutional advance in growth (3%), precocious puberty
stature) based on information available at the time. Frequently,
(2%), and Sotos syndrome, Klinefelter syndrome and non-
this was done on several visits. They were then advised to make
classical congenital adrenal hyperplasia (1% each).
a considered decision on whether to treat or not, and to convey
that decision to the author at a later date. If the family opted for Patients treated
intervention, all treatments were prescribed and supervised by
the author. Children not being treated were not followed up. Families opted for treatment in 68 of the 348 patients (19.5%). Of
Treated children had a bone-age and EFH estimation repeated those treated, 53 (78%) were girls and 15 (22%) boys. The
every 6 months. Girls were treated with oral ethinyl oestradiol percentage of children referred who were eventually treated was
200 mg per day, increasing to 300 mg per day if six monthly EFH similar in girls (22%) and boys (15%). Marfan syndrome was
estimations were not reducing. From 1998, when ethinyl present in 5 girls and 1 boy, and Klinefelter syndrome in 1 boy.
oestradiol was taken off the market, conjugated equine oestro- The rest of the treated children (90%) had FTS. Final height data
gen was prescribed at doses of 1.25–3.75 mg. Norethisterone was available in 37 (70%) girls and 11 (73%) boys. There was no
2.5 or 5 mg per day for 10 days a month was also prescribed. difference in age, height standard deviation score (SDS) and EFH
Boys were treated with intramuscular (IM) testosterone esters between those with FH data and those without, both for girls and
250 mg every 3 weeks, increasing to 250 mg every 2 weeks if boys; thus, pretreatment data for the entire group is combined.
six monthly EFH estimations were not reducing. Details of pretreatment age, height, body mass index (BMI)
Patients were asked to return after 3 months until FH was and EFH, target height (TH), duration of treatment and last
reached (defined as no gain in height over 9 months or a gain in available BMI in all patients and FH, where available, are shown
height of <1 cm over 12 months) or until the family decided to in Table 1. Girls and boys presented with a similar height (mean
cease treatment. All patients were asked to return in a further +/- standard error of the mean) SDS (2.7 +/- 0.1 and 2.7 +/- 0.2,
12 months. Not all families adhered to this advice for various respectively) but girls opted to start treatment with a lower mean
reasons and FH data was not available on those children. EFH SDS (3.1 +/- 0.7) than boys (3.6 +/- 0.9) (P = 0.03).
National Center for Health Statistics (NCHS) standards were As shown in Figure 1 and Table 1, the treated children were
used for height, weight and body mass index (BMI).3 Data on from tall families (EFH SDS range 0–2.9 in girls and 0.70–2.8
referrals were obtained from a patient database maintained by in boys) but the children were taller, even allowing for their
the author. Data on treated patients were obtained from patient parents’ heights (height SDS range 1.0–4.7 in girls and 1.6–3.5
files. Pre- and post-treatment data were analysed by unpaired or in boys; P < 0.001).
paired t-test and trends across time periods by analysis of vari- The mean apparent reductions in FH of 4.2 +/- 0.5 cm in girls
ance. Statistical significance was defined as a P-value of <0.05. and 5.1 +/- 0.8 cm in boys were both significant (P < 0.001).

Table 1 Patient characteristics and duration and results of treatment

Girls SEM (Range) Boys SEM (Range)

Pre-treatment n = 53 n = 15
Age (year) 12.5 0.4 (8.7–15.4) 14.2 0.5 (11.1–17.3)
Height SDS 2.7 0.1 (1.0–4.7) 2.7 0.2 (1.6–3.5)
BMI SDS 0.1^ 0.2 (-1.8–4.4) -0.3^^ 0.2 (-1.8–1.5)
EFH (cm) 182.5* 0.6 (174.0–190.3) 200.5** 1.6 (192.8–212.1)
EFH SDS 3.1*** 0.7 (1.4–4.4) 3.6*** 0.7 (2.4–5.3)
Target height SDS 1.5 0.1 (0–2.9) 1.6 0.2 (0.7–2.8)
Post-treatment n = 37 n = 11
Treatment duration (mo) 21 1.3 (4–36) 18.5 3.0 (6–37)
FH (cm) 178.2* 0.7 (170.0–187.0) 195.4** 1.4 (188.0–202.0)
EFH–FH (cm) 4.2 0.5 (-2.3–13.4) 5.1^^ 0.8 (2.0–9.4)
BMI SDS -0.2^ 0.2 (-1.8–1.9) 0.1 0.2 (-1.5–1.2)

Pre and post-treatment comparisons: *P < 0.001; **P < 0.001; ^ and ^^ not significant. Comparisons between girls and boys: ***P = 0.03. Age, pre-
treatment height SDS and EFH were similar in FH and no FH groups in both girls and boys so all were included in pre-treatment data.
BMI, body mass index; EFH, estimated final height; FH, final height; SDS, standard deviation score; SEM, standard error of the mean.

Journal of Paediatrics and Child Health 45 (2009) 58–63 59


© 2008 The Author
Journal compilation © 2008 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
Referrals for tall stature in children MJ Thomsett

Girls without FH data had a higher (P < 0.01) pretreatment 1985–1989. This fall in referrals over time was more marked
BMI SDS and post-treatment BMI SDS (0.7 +/- 0.3 and 1.1 in girls than boys (P = 0.001). Figure 3 shows a similar rise in
+/- 0.3, respectively) than girls with FH data (-0.3 +/- 0.2 treated cases initially, followed by an even greater decline over
and -0.2 +/- 0.2, respectively). No such BMI SDS differences recent years. No girls have started treatment since 1999 and no
were evident between boys with and without FH data. boys since 2002. The falls over time in both the percentage of
referrals who were girls and the percentage of girls who were
Temporal trends treated are significant (P = 0.001 in each), as shown in Table 2.
Such changes over time in boys were not significant. In girls, the
Temporal trends in gender differences are shown in Figures 2–4 mean height SDS at presentation rose (P = 0.02) and the mean
and Table 2. Figure 2 shows that referrals declined in later years EFH SDS also rose (P < 0.001) over the study period (Fig. 4).
so that referrals for 2000–2004 were only 28% of those in Thus, over time, fewer girls were seen, the mean presenting
height of girls was taller, girls were less likely to want treatment
and the EFH which led to treatment was taller – differences
were not seen in boys.

Complications
Minor complications during treatment were reported in 27 girls
(51%; often headaches, weight gain, nausea, dysmenorrhoea
and hirsutism) and 5 boys (33%; acne and oedema). However,
the only complication leading to cessation of treatment was
unacceptable weight gain in five girls (9.4%) who ceased treat-
ment after 6–13 months.

Discussion
The report details the experience of one clinician over 25 years
in seeing 345 and treating 68 children with tall stature. The
author was personally responsible for all aspects of the clinical
experience of the children, with a consistent approach to the
problem throughout. This involved providing as much informa-
tion as possible to the families and patients and insisting that
they make the decision to treat or not to treat themselves.
Eighty-five percent of the referred children and 90% of those
Fig. 1 Comparison of presenting height and target height in treated girls treated had FTS. The treated children were from tall families and
and boys. had EFHs >97 percentile. Of interest is that they were unusually
Mean presenting height standard deviation score (SDS) was significantly tall even for their tall parents. Reasons for this are not clear but
taller than mean target height SDS (P < 0.001) indicating that the treated studies looking at whether they have inherited multiple copies
children were tall for their already tall families. of genes coding for tallness would be interesting.

Fig. 2 Referrals for tall stature over time.


Total = 345; girls = 244 (71); Boys = 101 (29%).

60 Journal of Paediatrics and Child Health 45 (2009) 58–63


© 2008 The Author
Journal compilation © 2008 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
MJ Thomsett Referrals for tall stature in children

Fig. 3 Children referred and children treated


divided into 5-year intervals. The falls over time in
both referrals and children treated was signifi-
cant in girls (P = 0.001) but not boys.

regarded as so unsatisfactory that treatment is requested are


taller. Reasons for these changes in attitudes are conjectural.
What is regarded as ‘too tall’ has changed over recent decades.
The EFH in the last group of girls treated in the current report
ranged from 184.4 to 189.3 cm, whereas in Wettenhall’s 1975
Australian report,11 treatment was considered if the EFH was
>177 cm. Such differences have been developing earlier in other
countries.12 In a 1978 American report, the height regarded by
girls as too tall was 173 cm in the mid-1960s, rising to 183 cm in
the mid 1970s.13
Complications during treatment in this report have been
frequent but mild, consistent with other reports,4,7 although
9.4% of treated girls ceased therapy because of excessive weight
gain. Girls without FH data had higher BMI SDS before and
after treatment than those with FH data. Their failure to return
for follow-up could indicate dissatisfaction with a treatment,
Fig. 4 Changes over time in girls’ pretreatment and estimated final height making a weight problem worse. Formal data on patient satis-
SDS divided into 5-year intervals. Changes in both were significant (P = 0.02 faction with treatment and long-term complications are not
and <0.001, respectively). available in the present study.
However, a major Australian study on 1243 women who had
been assessed for tall stature between 1959 and 1993 provides
Unfortunately, FH data was not available in 39% of girls and important information on these issues. This examined the rela-
27% of boys. It is important to remember that this was not a tionship between concern about tall stature in adolescence and
clinical trial but treatment in a busy clinical setting. Attempts to depression in later life,1 satisfaction in later years with the deci-
retrieve data from patients not returning as requested were sion to treat or not to treat14 and long-term effects on fertility.15
often not successful. Forty-two percent of the treated women expressed dissatis-
It is possible that the difference between EFH and FH (4.2 faction with the decision to treat, whereas 99.1% of untreated
+/- 0.5 cm in girls and 5.1 +/- 0.8 cm in boys) would have been women were satisfied with the decision not to treat, regardless
smaller with more complete FH data. Results vary considerably of their FH. Reasons for dissatisfaction included not having a say
in different published reports. These differences may be due to in the decision-making, negative experiences in the assessment
different treatment regimens and inaccuracies in EFH prediction and treatment procedures, side-effects during treatment and
which appears to be more accurate in girls than in boys.4 The problems encountered in later life that the participants attrib-
mean reduction in FH compared with EFH has been reported as uted to their treatment.14
2.4 cm,5 3.0 cm,6 and 5.2 cm7 in girls and 5.4 cm8 and 9.0 cm9 in This study also reported that treatment was followed by
boys. Others report far less encouraging results.10 long-term effects on fertility.15 The treated group had greater
The results reported here suggest a profound change in atti- difficulty in conceiving than those untreated, although the
tudes to tall stature since around 1990, particularly in girls. Over proportion of women in each group who had ever been preg-
recent years, compared with previous years, not only fewer girls nant was similar.
are being referred, but those being referred are taller. They are Similar long-term concerns apply in boys. In one study, men
less likely to want treatment and the estimated final heights who had been treated for tall stature as boys had a lower sperm

Journal of Paediatrics and Child Health 45 (2009) 58–63 61


© 2008 The Author
Journal compilation © 2008 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
Referrals for tall stature in children MJ Thomsett

Table 2 Temporal trends in referrals, patients treated, pretreatment height SDS and estimated final heights

80–84 85–89 90–94 95–99 00–04

Referrals
Total 50 114 87 65 32
Girls 39 91 55 44 15
Boys 11 23 32 21 14
% Girls 78 80 63 68 46
% Boys 22 20 37 32 44
Treated
Total 18 24 16 9 1
Girls 13 19 11 9 0
Boys 3 5 5 1 1
% Girls 38 21 20 18 0
% Boys 27 22 16 5 7
Height SDS (mean (SD))
Girls 2.3 (0.9) 2.5 (0.7) 3.1 (0.7) 3.1 (0.5) P = 0.02
Boys 2.1 (0.5) 2.8 (0.8) 2.6 (0.8) ns
EFH cm (mean (SD))
Girls 180.0 (3.7) 181.8 (4.1) 183.6 (4.8) 186.9 (1.9) P = 0.001
Boys 199.3 (6.6) 199.7 (6.9) 201.9 (7.7) ns

EFH, estimated final height; ns, non-significant; SD, standard deviation; SDS, standard deviation score.

count, lower sperm motility and reduced normal sperm mor- or not. In general, high-dose sex steroid treatment of tall chil-
phology, together with a lower testosterone level than untreated dren should not be undertaken in the future.
controls.16
The Australian study1 found that the prevalence of major
Acknowledgements
depression in both treated and untreated women was high,
compared with the findings of population-based studies, and I thank Drs Andrew Cotterill, Mark Harris and Gary Leong for
highlighted the importance of attending to the mental health of reviewing drafts of the manuscript.
adolescents with self-concept and body image concerns.
These findings, although of concern, may not necessarily
apply to the patients presented here. Many patients in this
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Journal of Paediatrics and Child Health 45 (2009) 58–63 63


© 2008 The Author
Journal compilation © 2008 Paediatrics and Child Health Division (Royal Australasian College of Physicians)

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