madman
Super Moderator
Abstract
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 a holistic view of the barriers to men accessing effective treatment, this qualitative study captures the behaviors, 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, 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 support for more complicated cases, which often involve additional investigations that men are not expecting and might not result in treatment with testosterone therapy.
3.2 Living with TD
Themes that emerged as barriers to seeking help, accessing and accepting treatment and support are listed in Table 1.
3.3.1 Barriers to seeking help: men
3.3.1.1 Slow, gradual onset of non-specific symptoms like fatigue, loss of energy, and loss of muscle strength means that these are often normalized or misattributed
3.3.1.2 Lack of awareness and knowledge of TDor the associated symptoms including loss of libido and erectile dysfunction
3.3.1.3 Stigma, embarrassment, identity,'' machismo'', not wanting to associate with everything testosterone represents to them or from a societal view, meaning symptoms are not discussed or admitted to
3.3.2 Barriers to accessing/accepting treatment and support: men
3.3.2.1 Limited information exchange with the GP made TD more difficult to diagnose
3.3.2.2 Beliefs and perceptions of testosterone therapy based on use as a body-building supplement and concerns about side effects
3.3.2.3 Limited or no information supporting the decision to use testosterone therapy: how to take it, how long for, long-term safety, long-term benefits, and concerns not addressed
3.3.2.4 Variable experiences of endocrinology appointments
3.4 Barriers to providing treatment for TD: GPs
3.4.1 GP attitudes and beliefs
3.4.2 Barriers to diagnosis: GPs
3.4.3 Barriers to offering testosterone therapy: GPs
3.5 Barriers to providing treatment for TD: endocrinologists
3.5.1 Challenges in confirming a diagnosis of TD: endocrinologists
3.5.2 Barriers to offering testosterone therapy in secondary care: endocrinologists
3.6 Fitting the picture together: demonstrating how the different barriers for men, GPs, and endocrinologists interact to deny men access to diagnosis and effective treatment
4.1 Comparison with existing literature
4.2 Strengths and limitations
A major strength of this study is that it captures a broad range of opinions and experiences of GPs, endocrinologists, and men who have and have not requested help for symptoms of TD from across the UK. This is the first time to our knowledge that perspectives have been sought from all key stakeholders on the barriers to the management of TD.
A limitation of the study is the qualitative nature of the research in that it is reliant on a relatively small sample size may not be generalizable, but this was necessary in order to be able to explore the reasons behind the views and opinions voiced. Endocrinologists were the only secondary care specialists interviewed, but other specialists who may prescribe testosterone therapy and have alternative perspectives include urologists, sexual medicine specialists, and cardiologists
5. Conclusions
This study has identified barriers at every level that are preventing men from being diagnosed with TD and accessing appropriate treatment. This includes a lack of awareness of the symptoms of TD amongst both men and GPs. As a result, 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 in men reporting these symptoms. The stigma and embarrassment attached to low testosterone and symptoms such as erectile dysfunction prevent not only men from consulting a GP but also GPs from asking me about sexual symptoms. The taboo is therefore inadvertently reinforced by GPs.
Different attitudes and beliefs amongst GPs and endocrinologists around the definition of TD and at what testosterone level treatment should be initiated means there is continued variation in care, and a lack of consensus amongst endocrinologists across the UK despite attempts by the BSSM in 2017 and EAU in 2019 to provide guidance to standardize care. This lack of clarity may be contributing to GPs referring all symptomatic men with possible low testosterone to endocrinology. It also makes it difficult for GPs to set realistic expectations for men they have referred.
Since the spotlight on menopause over the past few years, awareness is now shifting towards hormonal therapy for men and there have been reports of a growing number of men asking for their testosterone level to be checked, whether or not they experience symptoms [12]. What is important is that GPs are better equipped to identify and appropriately manage those men who have TD as testosterone therapy is not a panacea for all.
This study has highlighted an educational opportunity to increase the confidence of GPs to identify, investigate, and manage straightforward cases of TD, with or without advice from endocrinologists. This would include:
• Raising awareness of the cluster of symptoms of TD.
• The need for total testosterone level to be performed as a fasting blood test between 7 am and 11 am in the morning, and to be repeated after four weeks to ensure accurate results.
• Assessing free testosterone levels in addition to total testosterone to confirm suitability for treatment with testosterone therapy.
• Optimising treatment of co-morbidities including type 2 diabetes.
• Addressing modifiable risk factors such as obesity.
• Understanding that testosterone therapy has a place for some individuals alongside these measures.
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 a holistic view of the barriers to men accessing effective treatment, this qualitative study captures the behaviors, 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, 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 support for more complicated cases, which often involve additional investigations that men are not expecting and might not result in treatment with testosterone therapy.
3.2 Living with TD
Themes that emerged as barriers to seeking help, accessing and accepting treatment and support are listed in Table 1.
3.3.1 Barriers to seeking help: men
3.3.1.1 Slow, gradual onset of non-specific symptoms like fatigue, loss of energy, and loss of muscle strength means that these are often normalized or misattributed
3.3.1.2 Lack of awareness and knowledge of TDor the associated symptoms including loss of libido and erectile dysfunction
3.3.1.3 Stigma, embarrassment, identity,'' machismo'', not wanting to associate with everything testosterone represents to them or from a societal view, meaning symptoms are not discussed or admitted to
3.3.2 Barriers to accessing/accepting treatment and support: men
3.3.2.1 Limited information exchange with the GP made TD more difficult to diagnose
3.3.2.2 Beliefs and perceptions of testosterone therapy based on use as a body-building supplement and concerns about side effects
3.3.2.3 Limited or no information supporting the decision to use testosterone therapy: how to take it, how long for, long-term safety, long-term benefits, and concerns not addressed
3.3.2.4 Variable experiences of endocrinology appointments
3.4 Barriers to providing treatment for TD: GPs
3.4.1 GP attitudes and beliefs
3.4.2 Barriers to diagnosis: GPs
3.4.3 Barriers to offering testosterone therapy: GPs
3.5 Barriers to providing treatment for TD: endocrinologists
3.5.1 Challenges in confirming a diagnosis of TD: endocrinologists
3.5.2 Barriers to offering testosterone therapy in secondary care: endocrinologists
3.6 Fitting the picture together: demonstrating how the different barriers for men, GPs, and endocrinologists interact to deny men access to diagnosis and effective treatment
4.1 Comparison with existing literature
4.2 Strengths and limitations
A major strength of this study is that it captures a broad range of opinions and experiences of GPs, endocrinologists, and men who have and have not requested help for symptoms of TD from across the UK. This is the first time to our knowledge that perspectives have been sought from all key stakeholders on the barriers to the management of TD.
A limitation of the study is the qualitative nature of the research in that it is reliant on a relatively small sample size may not be generalizable, but this was necessary in order to be able to explore the reasons behind the views and opinions voiced. Endocrinologists were the only secondary care specialists interviewed, but other specialists who may prescribe testosterone therapy and have alternative perspectives include urologists, sexual medicine specialists, and cardiologists
5. Conclusions
This study has identified barriers at every level that are preventing men from being diagnosed with TD and accessing appropriate treatment. This includes a lack of awareness of the symptoms of TD amongst both men and GPs. As a result, 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 in men reporting these symptoms. The stigma and embarrassment attached to low testosterone and symptoms such as erectile dysfunction prevent not only men from consulting a GP but also GPs from asking me about sexual symptoms. The taboo is therefore inadvertently reinforced by GPs.
Different attitudes and beliefs amongst GPs and endocrinologists around the definition of TD and at what testosterone level treatment should be initiated means there is continued variation in care, and a lack of consensus amongst endocrinologists across the UK despite attempts by the BSSM in 2017 and EAU in 2019 to provide guidance to standardize care. This lack of clarity may be contributing to GPs referring all symptomatic men with possible low testosterone to endocrinology. It also makes it difficult for GPs to set realistic expectations for men they have referred.
Since the spotlight on menopause over the past few years, awareness is now shifting towards hormonal therapy for men and there have been reports of a growing number of men asking for their testosterone level to be checked, whether or not they experience symptoms [12]. What is important is that GPs are better equipped to identify and appropriately manage those men who have TD as testosterone therapy is not a panacea for all.
This study has highlighted an educational opportunity to increase the confidence of GPs to identify, investigate, and manage straightforward cases of TD, with or without advice from endocrinologists. This would include:
• Raising awareness of the cluster of symptoms of TD.
• The need for total testosterone level to be performed as a fasting blood test between 7 am and 11 am in the morning, and to be repeated after four weeks to ensure accurate results.
• Assessing free testosterone levels in addition to total testosterone to confirm suitability for treatment with testosterone therapy.
• Optimising treatment of co-morbidities including type 2 diabetes.
• Addressing modifiable risk factors such as obesity.
• Understanding that testosterone therapy has a place for some individuals alongside these measures.
