Barriers to diagnosis and accessing effective treatment and support for testosterone deficiency

Testosterone deficiency is common but often undiagnosed and untreated with many men struggling with symptoms for years before reaching out for healthcare professional advice. In order to gain an holistic view of the barriers to men accessing effective treatment, this qualitative study captures the behaviours, beliefs and experiences of all key stakeholders: men with testosterone deficiency, general practitioners (GPs) and endocrinologists. The main findings include a lack of awareness and knowledge of the range of symptoms of testosterone deficiency amongst men and GPs, and stigma and embarrassment inhibiting open, proactive discussions between men and GPs and limiting diagnosis. Endocrinologists believe many men referred to them could be appropriately managed by GPs. Endocrinologists’ responsibility is to assess and provide appropriate treatment for more complicated cases, which often involves additional investigations that men are not expecting and might not result in treatment with testosterone therapy.

Testosterone deficiency; Testosterone therapy; Patient research

[1] Hackett G, Kirby M, Rees RW, Jones TH, Muneer A, Livingston M, et al. The British society for sexual medicine guidelines on male adult testosterone deficiency, with statements for practice. The World Journal of Men’s Health. 2023; 41: 508–537.

[2] Salonia A, Bettocchi C, Carvalho J, Corona G, Jones TH, Kadioğlu A, et al.; European Association of Urology. EAU guidelines on sexual and reproductive health. 2022. Available at: https://d56bochluxqnz.cloudfront.net/documents/full-guideline/EAU-Guidelines-on-Sexual-and-Reproductive-Health-2022_2022-03-29-084141_megw.pdf (Accessed: 13 January 2023).

[3] Mulligan T, Frick MF, Zuraw QC, Stemhagen A, McWhirter C. Prevalence of hypogonadism in males aged at least 45 years: the HIM study. International Journal Clinical Practice. 2006; 60: 762–769.

[4] Wiechno PJ, Kowalska M, Kucharz J, Sadowska M, Michalski W, Poniatowska G, et al. Dynamics of hormonal disorders following unilateral orchiectomy for a testicular tumor. Medical Oncology. 2017; 34: 84.

[5] Grossmann M, Matsumoto AM. A perspective on middle-aged and older men with functional hypogonadism: focus on holistic management. The Journal of Clinical Endocrinology & Metabolism. 2017; 102: 1067–1075.

[6] Cervoni E. NHS discrimination of testosterone deficiency syndrome. Trends in Urology and Men’s Health. 2020; 11: 23–26.

[7] Glaser BG, Strauss AL. The discovery of grounded theory. In Glaser BG, Strauss AL (eds.) The discovery of grounded theory (pp. 1–18). 1st edn. Routledge: New York. 2017.

[8] Hackett G, Kirby M, Edwards D, Jones TH, Rees J, Muneer A. UK policy statements on testosterone deficiency. International Journal of Clinical Practice. 2017; 71: e12901.

[9] Aceves‐Martins M, Quinton R, Brazzelli M, Cruickshank M, Manson P, Hudson J, et al. Identifying the outcomes important to men with hypogonadism: a qualitative evidence synthesis. Andrology. 2022; 10: 625–641.

[10] Gan EH, Pattman S, Pearce SHS, Quinton R. A UK epidemic of testosterone prescribing 2001–2010. Clinical Endocrinology. 2013; 79: 564–570.

[11] Sellke N, Omil-Lima D, Sun HH, Tay K, Rhodes S, Loeb A, et al. Trends in testosterone prescription during the release of society guidelines. International Journal of Impotence Research. 2023; 1–5.

[12] Stedman M, Livingston M, Albanese M, Hackett G, Heald AH. Hypogonadism is not being sufficiently recognised in 99% of general practices/family doctor surgeries. International Journal of Clinical Practice. 2020; 74: e13445.

[13] Heald AH, Stedman M, Whyte M, Livingston M, Albanese M, Ramachandran S, et al. Lessons learnt from the variation across 6741 family/general practices in England in the use of treatments for hypogonadism. Clinical Endocrinology. 2021; 94: 827–836.

[14] Lincoff AM, Bhasin S, Flevaris P, Mitchell LM, Basaria S, Boden WE, et al. Cardiovascular safety of testosterone-replacement therapy. New England Journal of Medicine. 2023; 389: 107–117.

[15] Dohle G, Arver S, Bettocchi C, Jones T, Kliesch S; European Association of Urology. EAU guidelines on male hypogonadism. 2019. Available at: https://d56bochluxqnz.cloudfront.net/media/EAU-Guidelines-on-Male-Hypogonadism-2019v2.pdf (Accessed: 22 September 2023).

[16] Corona G, Goulis DG, Huhtaniemi I, Zitzmann M, Toppari J, Forti G, et al. European academy of andrology (EAA) guidelines on investigation, treatment and monitoring of functional hypogonadism in males. Andrology. 2020; 8: 970–987.

[17] Hudson J, Cruickshank M, Quinton R, Aucott L, Aceves-Martins M, et al. Adverse cardiovascular events and mortality in men during testosterone treatment: an individual patient and aggregate data meta-analysis. The Lancet. Healthy Longevity. 2022; 3: e381–e393.