History and exam

Key diagnostic factors

common

infertility

The most common presenting symptom, affecting >99% of men with KS.[4]

  • More than 90% of men with KS are azoospermic.[2]

  • The great majority of diagnoses of KS are made in men who are undergoing evaluation for infertility.[3][4]​​

The European Academy of Andrology recommends karyotype analysis for KS in any man with nonobstructive azoospermia or severe oligozoospermia (total sperm count <10 million/ejaculate or sperm concentration <5 x 10⁶/mL).[3]

  • The prevalence of KS is 3% to 4% among all infertile men, 6% among those with a total sperm count <10 million/ejaculate, and 10% to 15% in those with nonobstructive azoospermia.[3] 

failure to complete pubertal maturation

The vast majority of boys with KS begin pubertal maturation on time, but fail to complete it in the usual timeframe.[2][14]

  • Puberty typically stalls after a year or two and remains incomplete.[2][3][5][14][15]

  • Biochemical and clinical hypogonadism develops from late puberty, typically occurring at around 14 years of age at Tanner stage 5 of puberty.[2]

small testes

The only clinical examination feature reliably seen in individuals with KS is small testes from mid-puberty onward. The testes may be firm or soft.[2][4]​​[14][18]​​ Testicular volume can be measured using the Prader orchidometer.

  • The testes are typically normal in size or only slightly small in prepubertal childhood.

  • They begin to enlarge normally at the onset of puberty, typically around 11-12 years of age. However, they rarely progress beyond a bi-testicular volume of 10 mL and this is then followed by involution, with the testes shrinking to around 3-5 mL (the size of an almond kernel) in older adolescents due to the onset of hypogonadism.[2][4]

  • Bi-testicular volume is <6 mL in >95% of adult men with KS.[1][26]

Rarely, in severe phenotypes, a boy may be born with reduced testicular volume due to intrauterine hypogonadism.[3][Figure caption and citation for the preceding image starts]: Prader orchidometerCreated by BMJ Knowledge Centre [Citation ends].com.bmj.content.model.Caption@ff6b928

expressive speech delay in early childhood

Delayed speech development has been reported in 40% of children with KS.[1][4]​​ Expressive verbal ability is most often affected; toddlers may be slow to start speaking but their receptive comprehension is usually normal.[2][21]

Among adolescents with KS, deficits in expressive language skills are more common than in peers without KS​.[3]

uncommon

micropenis

​Rarely, in severe phenotypes, a boy may be born with micropenis (stretched length ≥2.5 standard deviations [SD] below the mean for age) due to intrauterine hypogonadism.[3] KS is part of the differential diagnosis if examination of a newborn boy identifies this sign.[2][3] 

Decreased penile size is seen in 10% to 25% of boys with KS but it is very rare for them to fulfill the criteria for micropenis.[3]

cryptorchidism

In rare cases, newborn boys with KS may have cryptorchidism although this is very rare.[3] KS is part of the differential diagnosis if examination of a newborn boy identifies this sign.[2][3]

For more information, see Cryptorchidism.

Other diagnostic factors

common

developmental delay

Learning and developmental delays are most commonly noted between 1-5 years of age but are nonspecific and do not necessarily point to the diagnosis.[13][17][20]

  • Some degree of learning disability has been reported in >75% of boys with KS.[1][4]

  • Some boys with KS have problems with attention and executive cognitive function, which can lead to expressions of frustration.[2][3]

  • Boys with KS will often be receiving special educational support.​[1][2][3]

In rare cases, a boy with KS may be very slow to start walking and KS will be identified on chromosomal testing.[22]

behavioral problems in childhood

Common in boys with KS.

  • Infants are sometimes reported as being easy to manage and not as demanding as their siblings.[2]

  • Boys with KS may be quiet and passive, but impulsivity may be present and difficulties with self-expression and executive tasks may lead to temper tantrums and anger outbursts.[2][23]

  • One population-based study found an increased risk of attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders among individuals with KS.[24]

tall stature

Affects around 30% of KS individuals and is believed to be due to the presence of three copies of the SHOX gene.[1][2][4][23]

  • Infant length is typically within age-related norms.

  • The rate of height increase tends to accelerate throughout childhood so that by school age, boys with KS may be on a higher centile than predicted (based on mid-parental height and/or compared with siblings).[2]

  • Look for an upward shift in height centiles during childhood.

Tall individuals with KS have disproportionately longer legs.[3][4]​​

  • However, extreme tall stature is unusual.[2]

lack of facial and pubic hair

​May be noted in adolescents and adult men.[1]

  • Lack of facial and pubic hair (e.g., compared with close male relatives) have a reported prevalence of 60% to 80% and 30% to 60%, respectively.[1]

  • A sign of hypogonadism.

gynecomastia

Seen on exam in around one third of adolescents and up to three-quarters of adult men with KS.[1][2]​​​ However, this is a nonspecific sign​.

sexual dysfunction/reduced libido

Sexual dysfunction or low libido in adult men may be related to low testosterone levels but this is not typical in adolescents.[2][14]​​

high fat-to-muscle ratio/abdominal obesity

Weight gain can begin in childhood or adolescence and often persists into adulthood.

  • Central obesity (“pot belly” and wider hips) is common after the adiposity rebound at 6-7 years.[2]

  • A high abdominal fat mass, together with decreased muscle mass and strength, are present in around half of adolescents with KS but are very nonspecific signs.​[2][4]

  • Obesity is often seen in adulthood, particularly around the abdomen and hips.[2][3]

social/ psychological issues

Social skills may take longer to develop and boys with KS sometimes feel isolated and/or prefer their own company.[2]

KS has been reported to be associated with difficulties identifying and verbalizing emotions.[3] 

Social and psychological issues may continue into adolescence and adulthood.​[3]

fatigue

Fatigue/lethargy is a nonspecific finding that is common in individuals with hypogonadism.

Risk factors

weak

increased maternal age

An association of KS with increased maternal age can be attributed to a higher rate of maternal meiosis I errors.[3][5]

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