NEW UK QUALITATIVE STUDY IDENTIFIES MEN EXPERIENCE BARRIERS TO DIAGNOSIS AND TREATMENT OF TESTOSTERONE DEFICIENCY AT EVERY LEVEL OF THE CARE PATHWAY

• Study involving interviews with 20 middle-aged men identified embarrassment, reluctance to seek help, lack of knowledge, and that men often wait years before seeing their GP.¹
• Interviews with 30 GPs showed they differ in their knowledge, attitudes and beliefs about TD and range from being highly supportive to dismissing symptoms as part of ageing.¹
• Interviews with 10 endocrinologists showed different interpretations of what level of testosterone requires investigation and intervention despite the availability of guidelines.¹

Monday 25 March 2024 – Men with testosterone deficiency (TD) face barriers to diagnosis and treatment at every level of the care pathway, a new qualitative study commissioned and funded by Besins Healthcare published in the Journal of Men’s Health has found. The paper, entitled Barriers to Diagnosis and Accessing Effective Treatment and Support for Testosterone Deficiency¹ reports that a lack of awareness and knowledge of the range of symptoms of testosterone deficiency, combined with the stigma and embarrassment associated with the condition, is inhibiting open, proactive discussions between men and GPs, and limiting diagnosis. In addition, the study found that there are often delays in diagnosis because men do not think to seek help or advice for non-specific symptoms such as fatigue, low mood or decreased muscle mass, and some GPs do not think to check testosterone levels when met with these symptoms.

The aim of the qualitative study was to gather a complete, holistic picture of the barriers preventing men with symptoms from being diagnosed and accessing support and appropriate treatment. It involved in-depth, 60-minute interviews conducted with 20 men aged 45 to 62, 30 GPs and 10 endocrinologists from across the UK. Data from the interviews was then analysed and cross-referenced to identify key issues and how they might be addressed.

The results of interviews revealed barriers at every point in the care pathway. There is a lack of awareness of the symptoms among men and GPs, a shared reluctance to broach “embarrassing” subjects such as reduced libido or erectile dysfunction, and a lack of knowledge and confidence among some GPs in how to manage patients. Differing attitudes and beliefs among GPs and endocrinologists around the definition of testosterone deficiency and at what testosterone level treatment should be initiated also mean there is continued variation in treatment approaches, despite the availability of guidelines. The paper concludes that there is an “educational opportunity” to increase the confidence of GPs to identify, investigate and manage straightforward cases of testosterone deficiency.

Testosterone deficiency is common in men aged over 40 and has a considerable impact on quality of life, well-being, and long-term health outcomes.² The estimated incidence of symptomatic testosterone deficiency in men aged 40-70 years varies between 2.1 and 5.7³ with an estimated prevalence of as much as 38.7%⁴ depending on the criteria used to diagnose testosterone deficiency. Despite evidence-based guidelines, many men with symptomatic testosterone deficiency are still undiagnosed and untreated.^2,5,6

The perspectives of men

For the twenty middle-aged men interviewed for this study, researchers found that a sense of stigma, embarrassment and “machismo” often meant that men were reluctant to discuss symptoms with their doctor. Men reported a slow, gradual onset of non-specific issues like fatigue, loss of energy and loss of muscle strength, which were often normalised or misattributed to age, stress, hard work, exercise, or minor illness. The men did not necessarily equate loss of libido or erectile dysfunction to low testosterone, and very few were aware of the link between these sexual symptoms and other symptoms. All men were uncomfortable discussing their sexual symptoms with their doctor; the loss of libido or erectile dysfunction were the key triggers for seeking help, usually driven by a need to ‘fix’ this issue for the sake of their relationship. Some men reported that getting a diagnosis of testosterone deficiency could take several months or years. Limited GP consultation time also made it difficult to have a meaningful conversation, especially when they need to overcome embarrassment – and feeling rushed meant that they may not report all symptoms.   

The perspectives of GPs

Interviews with 30 GPs revealed marked variation in care, with three clear groups of GPs showing differing approaches to the diagnosis and management of testosterone deficiency: a small number of specialist GPs who believed testosterone deficiency is clinically or psychologically important and generally diagnosed and treated it themselves; a majority of GPs who were less knowledgeable but believed testosterone deficiency should be treated – these GPs expressed concern about potential risks and always referred patients to endocrinologists for confirmation of diagnosis and treatment initiation; and lastly, a small number of GPs did not consider testosterone deficiency to be clinically important, and were not convinced about the necessity for treatment.

The perspectives of endocrinologists

The 10 endocrinologists interviewed for this study recognised testosterone deficiency as a clinically important condition requiring treatment and believed that treatment should be initiated as soon as possible. The researchers also found that endocrinologists often had to manage patient expectations around treatment: in patients diagnosed with low testosterone, endocrinologists will need to identify the root cause, which may involve underlying conditions such as diabetes or obesity or be a consequence of other medication.  The findings also showed there is variation in the treatment thresholds used by different clinicians. Some endocrinologists expressed some frustration in the type of cases referred to them, believing that the majority of straightforward cases should be managed in primary care with advice, if required.

Dr Janine David, GP and Secretary of the British Society for Sexual Medicine, and co-author of the study explained,

“Testosterone deficiency is complex, poorly understood and significantly under-diagnosed, yet it can have a huge impact on a person’s relationships, wellbeing, and long-term health. This research shows how the cards are often stacked against men who need timely diagnosis and treatment.

“Like menopause care, we need to start talking more openly about testosterone deficiency as a medical condition, bringing it out of the shadows so that more men understand their symptoms and feel able to come forward for treatment.

“As we do so, it is also important we improve the consistency and standard of care across the NHS, raising knowledge and awareness among clinicians and developing clearer guidelines on the treatment and management of this condition so that we can offer men the right support.”

The paper highlights the need for men to be more proactive about seeking medical advice and if they are showing symptoms of TD to contact their GPs. The insight from GPs shows the need for some GPs to upskill on TD and be more familiar with the existing guidelines in order to be able to help more men presenting with symptomatic TD. And finally, there is an opportunity for endocrinologists to align on treatment to ensure more equitable access for men with TD to improve patient outcomes.

Besins Healthcare UK has created a testosterone deficiency education website and campaign called ‘Stronger Voices’ designed to empower men and their partners to understand the condition, identify potential symptoms and take action to address their well-being. Resources include the internationally recognised Androgen Deficiency in Aging Males (ADAM) questionnaire and a downloadable guide to starting a conversation with their doctor. The public facing disease education awareness website can be accessed at www.strongervoices.co.uk.

About Besins Healthcare UK

Besins Healthcare is a specialist pharmaceutical company with a strong family heritage that specialises in producing the highest quality hormone therapies for the patients that need them. Our hormone replacement therapies are trusted by patients and physicians worldwide for conditions including menopause, endometriosis, reproductive health, and testosterone deficiency. By working with passion and commitment, we develop and deliver hormone therapies and solutions to people with hormone imbalance in the UK and Ireland.

Our aim is to empower those with life-impacting hormonal conditions, enabling them to lead fulfilling lives both now and in the future. Our patient-centric ethos is: “By your side, for life”.

www.besinshealthcare.co.uk

About Stronger Voices campaign

The Stronger Voices testosterone deficiency education website has been developed to empower men and their partners to understand the condition, identify potential symptoms and take action to address their well-being. Resources include the internationally recognised Androgen Deficiency in Aging Males (ADAM) questionnaire and a downloadable guide to starting a conversation with their doctor. The website can be accessed at www.strongervoices.co.uk.

For media enquiries, please contact:

References

¹ Janine David, Alexandra Charles. Barriers to diagnosis and accessing effective treatment and support for testosterone deficiency. Journal of Men's Health. 2024.doi:10.22514/jomh.2024.001. https://www.jomh.org/articles/10.22514/jomh.2024.001# (Last accessed 29 January 2024).

² Hackett G, Kirby M, Rees RW et al. The British Society for Sexual Medicine Guidelines on Adult Testosterone Deficiency, With Statements for Practice. World J Mens Health. 2023;41(3):508-537.

³ Salonia A, Bettocchi C, Carvalho J, Corona G, Jones TH et al. EAU Guidelines on Sexual and Reproductive Health. European Association of Urology 2022. Available from: https://d56bochluxqnz.cloudfront.net/documents/full-guideline/EAU-Guidelines-on-Sexual-and-Reproductive-Health-2022_2022-03-29-084141_megw.pdf

⁴ Mulligan T, Frick MF, Zuraw QC et al. Prevalence of hypogonadism in males aged at least 45 years: the HIM study. International Journal Clinical Practice. 2006;60(7):762-769.

⁵ Grossman M and 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(3):p1067-1075.

⁶ Cervoni E. NHS discrimination of testosterone deficiency syndrome. Trends in Urology and Men’s Health. 2020; March/April: 23-26