What are community perspectives and experiences around low testosterone? A cross-sectional study in the UK
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Background Prevalence of late-onset testosterone deficiency (TD) differs amongst studies, with estimates between 6-30% depending on diagnostic criteria used. Nonspecific symptoms and lack of symptom awareness often delays appropriate treatment. Methods A 54-item online survey investigated the prevalence of TD symptoms and experiences of men on treatment. The survey was distributed through online media channels, Prolific and academic networks. Symptoms were assessed using the qADAM questionnaire. Associations between age, qADAM scores and participant demographics were assessed using logistic regressions to understand the prevalence and barriers to accessing treatment. Results Of the 973 men, nearly half (49%) indicated high likelihood of TD using qADAM scores, despite only 4% being formally diagnosed. Men over 50 had 1.4-2.0 times higher odds of TD compared to younger men (OR 51-60yrs_vs_ < 40yrs :1.43, p=0.05; OR 60+years_vs_ < 40yrs :2.03, p=0.001). 30% reported low libido, 7% reported reduced erectile strength, and 26% reported over three symptoms associated with TD. Despite high symptom prevalence, awareness and uptake of treatment remained low. 56% were unfamiliar with symptoms and signs associated with low testosterone. Only 7% of individuals expressed satisfaction with their access to low testosterone resources in the UK. Key barriers to seeking medical advice or treatment included lack of awareness of symptoms (40%), financial costs (34%) and stigma surrounding hormonal health (29%). Conclusions Although nearly half of individuals exhibited a high likelihood of TD, over 95% remained undiagnosed. This highlights significant gaps in symptom awareness and access to treatment options, including the need to improve health literacy around TD to democratise access to care.