Background Klinefelter syndrome, the most common chromosomal disorder in men, remains underdiagnosed in many of those affected due to its phenotypic variability. Only 26-40% of Australian men are diagnosed during their lifetime(1), though the associated morbidity and mortality results in a 2-6 year reduction in lifespan(2).
Methods and Aim: Adult patients with Klinefelter syndrome attending a Clinical Andrology Service in a tertiary Australian institution since 1 January 2011 were invited to contribute to a REDCap database with longitudinal follow-up (3). Within this framework, we aimed to study the clinical features at presentation, and whether these had changed in the past 10 years..
Results: Recruitment has resulted in 59 of 96 eligible patients participating thus far (Figure 1). The median age at diagnosis was 28 years with the most common karyotype being 47,XXY (74%). Infertility (42%) and hypogonadism (31%) were the most common reasons for diagnosis, with most patients being diagnosed between the ages of 18 to 35 years (63%). Younger adults had a more varied presentation including gynaecomastia, cognitive/psychological concerns and osteoporosis, or a combination thereof whereas adults diagnosed after 35 years of age almost exclusively presented with infertility, hypogonadism and/or reduced testicular volume (Table 1). Trends in diagnosis do not appear to have changed in the past 10 years (Table 2).
Conclusions: Klinefelter syndrome diagnosis continues to be delayed until adulthood in many men, with presentations most commonly involving infertility and/or hypogonadism, Our cross-sectional study suggests that diagnostic trends have not changed in adult men in the past 10 years. As prenatal diagnoses become increasingly frequent (3), appropriate care pathways should be established to optimise the management of paediatric and adult males with Klinefelter syndrome.