Abstract
Abstract
Objectives
Non-specific symptoms of testosterone deficiency (TD) and lack of awareness impact diagnosis and appropriate treatment. This study aimed to characterise the awareness of key symptoms of TD in community-dwelling men and contextualise this against the reported prevalence of these symptoms.
Design
Cross-sectional survey comprising 54 questions (including assessment of symptoms as per the qADAM questionnaire and where relevant, men’s experiences while on TD treatment). The survey was distributed through online media channels, Prolific and academic networks.
Setting
Community-dwelling men in the UK.
Outcome measures
Associations between age, participant demographics and a ‘positive’ qADAM score were assessed using logistic regression. A positive qADAM score was defined as self-rated ‘poor’ or ‘terrible’ libido or erection strength or rating 3 of the other questionnaire domains as ‘poor’ or ‘terrible’.
Results
Of 973 men, 49% indicated high likelihood of TD using qADAM scores—5% were formally diagnosed. Men over 50 years of age had 1.54–2.0 times higher odds of TD compared with men aged <40 (p<0.05). 31% reported low libido, 27% reported reduced erectile strength and 26% reported over three symptoms associated with TD. Despite this, 55% were unfamiliar with symptoms/signs associated with TD. 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 (39%), financial costs (35%) and stigma surrounding hormonal health (29%).
Conclusions
Almost half of the responders exhibited a burden of TD-associated symptoms, but under 5% had a formal diagnosis. These findings suggest significant gaps between symptom awareness and access to treatment options.
Keywords: Health Education, Health policy, Patient Reported Outcome Measures, Cross-Sectional Studies, eHealth, SEXUAL MEDICINE
STRENGTHS AND LIMITATIONS OF THIS STUDY.
This is the first quantitative study to investigate the awareness and prevalence of testosterone deficiency symptoms in the UK male population.
The study included a large sample size of 973 men, permitting insight into potential disparities between symptom burdens and formal diagnoses.
The electronic distribution of the survey could have excluded men with limited digital access, and the nature of the condition means that responses may be influenced by social desirability or stigma.
The cross-sectional design of the survey precludes causal inference on associations between variables.
Introduction
Male hypogonadism is a clinical syndrome characterised by signs and symptoms associated with low testosterone and biochemical evidence of testosterone deficiency (TD). Both primary and secondary hypogonadism have reproductive (loss of libido, oligospermia) and non-reproductive (fatigue, low mood) clinical features, whereas clinical diagnoses are made based on symptoms and morning serum testosterone levels.
There is a natural age-related decline in hypothalamic-pituitary function and gonadotrophin secretion that decreases testosterone production, resulting in an increased prevalence of hypogonadism in men over 40 years old.1 Age-related physiological changes have seen renewed interest in recent years, and modifying declining hormone levels with replacement therapies can improve long-term health outcomes, an example being menopause. Hypogonadism, also known as TD, is associated with increased cardiovascular risk and major adverse cardiovascular events. There is also a bidirectional link between low testosterone and metabolic syndrome, obesity and type 2 diabetes.2,4 With a plethora of testosterone replacement treatment options and recent TRAVERSE study data demonstrating a relative safety of therapy,5 age-related TD should be viewed as a modifiable risk factor and demands further investigation. The first steps towards understanding the scope for potential benefit of appropriate interventions in men with TD include the quantification of symptom burden in the target population.
The prevalence of late-onset TD differs among studies, with ranges between 6–30%,6 7 depending on the characterisation and definitions used. Differences in diagnostic criteria and treatment thresholds between the Society for Endocrinology compared with the British Society of Sexual Medicine highlight the challenges faced.
In this context of potentially significant proportions of men affected by the symptoms of TD, it is notable that age-related or late-onset hypogonadism in men is still relatively under-diagnosed. TD therefore represents a common cause of later life comorbidity and reduced quality of life. Prior studies have focused on inferring the extent of population burdens of TD with quantification of testosterone levels in community cohorts. However, there is limited evidence on the burden of TD-associated symptoms in this setting, particularly in the UK. Characterising potential disparities between symptom prevalence and the proportions of men that have received formal diagnoses could facilitate deeper understanding of unmet needs in men’s health.
This study sought to explore the awareness of TD symptomatology in community-dwelling men, characterise the prevalence of TD symptoms in the same and then contextualise this against the proportions of men that have received a formal diagnosis of TD. Using a web-based survey, the study aimed to deepen understanding of potential underdiagnosis and potential barriers to seeking medical advice and treatment.
Methods
Study approach, setting and participants
This study was a cross-sectional online survey which sought to explore the knowledge, attitudes and perceptions regarding symptoms of TD and options for its treatment. Participants were UK-resident community-dwelling adult men. The study adopted a quantitative methodology using an electronic survey drawing on comparable research design in women’s health.8 The survey used adaptive questioning and comprised a total of 54 questions. It was accessible using a personal computer or smartphone.
Consent and data protection
The participant information sheet included information regarding the study’s aims, the protection of participants’ personal data, their right to withdraw from the study at any time, which data were stored, where and for how long, who the investigator was, the purpose of the study and survey length. Participants were informed that this was a voluntary survey without any monetary incentives but were offered the possibility of accessing findings at a later stage. Data collected were stored on a secure database at Imperial College London, and only the research team could access the eSurvey results. All responses were pseudoanonymised to ensure confidentiality by assigning each respondent a unique study ID. Only the participants’ demographic data including age in years, gender, ethnicity, residence, education and employment status were recorded. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.9
Participant recruitment
The link to the electronic survey was published and made available on the Imperial College Qualtrics platform between 25 April 2024 and 1 August 2024. The survey could be accessed by anyone with a link and took 10 min to complete. Survey participants were recruited through affiliates’ mailing lists, such as partnering organisations, including Manual, Optimale, H3 Health and community groups run by the Men’s Health Clinic. Additional recruitment channels included online media platforms, such as Meta, X and LinkedIn and Prolific Academic panel, an online platform where researchers can make their surveys available to participants with specific demographic backgrounds.10 In addition, the researchers’ personal and professional networks were also mobilised to disseminate the eSurvey.
Electronic survey setup
The survey consisted of a structured questionnaire designed to assess knowledge, attitudes and behaviours around low testosterone and available treatments. The survey comprised a total of 54 items distributed over 32 pages (ranging from 1 to 4 questions on each page), including the domains of the qADAM questionnaire (see below). The survey is available to review in online supplemental file 1.
The survey was designed to capture opinions from a diverse cross-section of UK adults. Respondents were able to review their answers before submitting them (through a back button). Usability and technical functioning of the online survey was tested before publishing.
All survey items were conditional and required a response. Respondents were prompted to complete outstanding items before leaving the survey page on which the item was contained. Items were not randomised or alternated, and most items included a ‘None of above/prefer not to say’ option. To prevent participants from completing the survey more than once, Qualtrics XM places a browser cookie on response submission, barring repeat attempts. Similarly, Prolific uses digital fingerprinting and geo-IP traps to enforce single survey completion.
Respondents were not excluded from the survey if they completed the items too quickly; the minimum completed survey was timed at approximately 3.1 min. Only completed responses were included in the dataset.
Baseline data collection and exposures of interest
The survey collected information on baseline demographics (including age, ethnic group, education level, employment status, marital status, smoking status and the presence of self-reported comorbidities) and a measure of self-rated health. The latter was a 1–10 scale ranging from 1 (worst possible) to 10 (best). The key exposure of interest was age.
Key outcome measures
As part of the survey, all respondents completed the qADAM questionnaire, a tool which quantifies the severity of a set of symptoms that are associated with TD and can be used to quantify the likelihood of TD. The qADAM questionnaire consists of 10 questions, each scored with a 5-point Likert scale (1–5, with five representing most severe symptoms). The lowest possible score is 10 (the most florid symptoms on all domains) and the highest possible score is 50 (no symptoms at all).11 In the study that developed the quantitative Androgen Deficiency in the Aging Male (qADAM) tool, 57 men scheduled to undergo a radical prostatectomy for prostate cancer completed the questionnaire, as well as the Sexual Health Inventory for Men (SHIM) and the hormonal and sexual domains of the Expanded Prostate Cancer Index Composite (EPIC). The qADAM scores were positively correlated with SHIM scores (r=0.44, p=0.001) and both the sexual (r=0.57, p<0.001) and hormonal components (r=0.03, p=0.016) of EPIC. Of these 57 men, 34 had baseline total serum testosterone levels available for correlation analyses. qADAM scores were positively correlated with serum testosterone with an r of 0.35 (p=0.046).11
The total qADAM scores (sum of all domain scores) were handled in two ways in the analyses. First, they were handled as a binary outcome (‘positive’ qADAM questionnaire result) and then were also categorised into quintiles. On the basis of discussion with TD clinicians, a ‘positive’ qADAM questionnaire result was defined as respondents selecting a ‘terrible’ or ‘poor’ rating for libido levels, erection strength or any 3 of the other symptoms in the qADAM (energy levels, strength and/or endurance, enjoyment of life, happiness levels, work performance, sports ability, amount of height loss and frequency of falling asleep). This was not used as a formal diagnostic threshold; rather, it was used as a clinically-guided pragmatic definition of men with a burden of symptoms that could be appropriate for consideration of TD. Score quintiles were defined by splitting the 10–50 score into fifths (scores: 10–17, 18–25, 26–33, 34–42, 43–50).
Data analysis
Medians and IQR were calculated for continuous patient characteristics, and N (%) was calculated for categorical characteristics, overall and by quintile of qADAM symptom severity. We examined attitudes and behaviours by age group and awareness of testosterone replacement therapy (TRT) using χ2 test and Kruskal-Wallis tests. Associations between demographics and symptom severity and demographics and attitudes towards treatment were assessed using univariable and multivariable logistic regressions. Four models were fit in total. We fit two unadjusted models for understanding associations between age and the binary ‘positive qADAM questionnaire result’ and associations between age and awareness of treatment options. We then repeated these analyses with adjustment for ethnicity, marital status, employment status and education level. For all models, ORs were estimated. For the age-positive qADAM questionnaire result models, the OR represented the odds of a man in each age group having a ‘positive’ qADAM questionnaire result, relative to the age ≤40 years group. For the age-awareness of treatment options models, the OR represented the odds of men aged over 40 years reporting awareness compared with men aged younger than 40 years. A p value <0.05 was considered statistically significant.
All analyses were performed using STATA, V.15 (StataCorp LP, College Station, Texas, USA). The Checklist for Reporting Results of Internet E Surveys12 and the Strengthening the Reporting of Observational Studies in Epidemiology were used to guide reporting13; onlinesupplemental files 2 3.
Patient and public involvement
No patients were involved as research participants. The study protocol and online survey were developed in collaboration with Menwell, which included input from the PPI group and lay members. The survey was reviewed during beta testing to improve usability and wording of questions.
Sample size consideration
As this study’s aims were descriptive, that is, to understand awareness and prevalence of TD symptoms and benchmark this against formal diagnosis, we did not perform a formal sample size or power calculation. The sample size for the study sample was set by the number of men that engaged with the survey via its broad online distribution strategy.
Results
Demographic profile of respondents
973 out of 1682 total responses were included in the analysis (completion rate: 58%). The median age was 45.0 years (IQR 35.0–57.0), median BMI was 26.3 (23.9–29.7), and most self-identified as white race (86%), sexually active (79%), employed (76%) and partnered or married (67%). All respondents confirmed their assigned sex at birth was male, 99% identified with that same gender identity and the remaining 1% identified as ‘other’ including non-binary or agender. In view of this, we opted for the use of the term ‘men’ in this article but remain aware that low testosterone does not solely concern cisgender men.
Participants suffering from the worst symptoms were in the lowest qADAM quintile (Q1) and tended to be older, have a higher BMI, have lower self-reported overall health score, were less likely to be sexually active, were more likely to be current or past smokers and were more likely to experience depression or anxiety. Q1 individuals were also more likely to be thinking about using TRT treatment in the future, although they were less likely to have access to private healthcare to receive treatment compared with those who were experiencing the least frequency and severity of symptoms. Median self-reporting of overall health score (between 1=worst and 10=best) was 7.0 (6.0–8.0) and median qADAM score was 29 (IQR 25–33). Participant characteristics, overall and quintile of qADAM scores, are shown in table 1.
Table 1. Demographic characteristics, overall and by quintile of qADAM score*.
| Quintile 1 (lowest qADAM score) | Quintile 2 | Quintile 3 | Quintile 4 | Quintile 5 (highest qADAM score) | Total | P value† | |
|---|---|---|---|---|---|---|---|
| N | 206 | 188 | 200 | 226 | 153 | 973 | |
| Age | 46.5 (36.0, 58.0) | 47.0 (37.0, 58.0) | 45.0 (32.0, 58.0) | 45.0 (35.0, 54.0) | 42.0 (32.0, 53.0) | 45.0 (35.0, 57.0) | 0.01 |
| Body mass index (BMI) | 27.5 (24.9, 31.6) | 26.3 (23.8, 30.1) | 26.2 (24.1, 29.6) | 25.7 (23.8, 29.1) | 25.3 (23.2, 27.1) | 26.3 (23.9, 29.7) | <0.001 |
| Self-reported overall health | 5.0 (4.0, 7.0) | 7.0 (6.0, 7.0) | 7.0 (6.0, 8.0) | 7.0 (7.0, 8.0) | 8.0 (7.0, 9.0) | 7.0 (6.0, 8.0) | <0.001 |
| Gender | . | ||||||
| Male | 206 (100%) | 188 (100%) | 200 (100%) | 226 (100%) | 153 (100%) | 973 (100%) | |
| Ethnicity | <0.001 | ||||||
| Asian, Asian British | 13 (6%) | 7 (4%) | 12 (6%) | 9 (4%) | 12 (8%) | 53 (5%) | |
| Black, Black British, Caribbean | 4 (2%) | 0 (0%) | 3 (2%) | 6 (3%) | 17 (11%) | 30 (3%) | |
| Mixed or multiple ethnic groups | 3 (1%) | 6 (3%) | 6 (3%) | 10 (4%) | 4 (3%) | 29 (3%) | |
| Other ethnic groups (please specify) | 2 (1%) | 2 (1%) | 3 (2%) | 3 (1%) | 6 (4%) | 16 (2%) | |
| Prefer not to say | 1 (0%) | 2 (1%) | 2 (1%) | 0 (0%) | 1 (1%) | 6 (1%) | |
| White | 183 (89%) | 171 (91%) | 174 (87%) | 198 (88%) | 113 (74%) | 839 (86%) | |
| Education level | 0.001 | ||||||
| Primary school | 3 (1%) | 0 (0%) | 0 (0%) | 1 (0%) | 0 (0%) | 4 (0%) | |
| Secondary school/high school | 26 (13%) | 20 (11%) | 17 (8%) | 13 (6%) | 7 (5%) | 83 (9%) | |
| GCSEs or equivalent | 13 (6%) | 8 (4%) | 11 (6%) | 14 (6%) | 4 (3%) | 50 (5%) | |
| Vocational qualification | 28 (14%) | 26 (14%) | 15 (8%) | 27 (12%) | 5 (3%) | 101 (10%) | |
| A-levels or equivalent | 28 (14%) | 21 (11%) | 32 (16%) | 22 (10%) | 22 (14%) | 125 (13%) | |
| Undergraduate degree (eg, Bachelor of Arts, BA) | 74 (36%) | 79 (42%) | 82 (41%) | 96 (42%) | 64 (42%) | 395 (41%) | |
| Postgraduate degree (eg, Master of Arts, MA; Master of Science; MS; Doctor of Philosophy, PhD) | 33 (16%) | 31 (16%) | 40 (20%) | 50 (22%) | 50 (33%) | 204 (21%) | |
| Other | 1 (0%) | 3 (2%) | 3 (2%) | 3 (1%) | 1 (1%) | 11 (1%) | |
| Employment status | 0.002 | ||||||
| Employed | 142 (69%) | 138 (73%) | 149 (74%) | 181 (80%) | 126 (82%) | 736 (76%) | |
| Prefer not to say | 6 (3%) | 4 (2%) | 3 (2%) | 2 (1%) | 3 (2%) | 18 (2%) | |
| Retired | 30 (15%) | 31 (16%) | 31 (16%) | 28 (12%) | 15 (10%) | 135 (14%) | |
| Student | 1 (0%) | 3 (2%) | 8 (4%) | 6 (3%) | 5 (3%) | 23 (2%) | |
| Unemployed | 27 (13%) | 12 (6%) | 9 (4%) | 9 (4%) | 4 (3%) | 61 (6%) | |
| Current healthcare professional | 11 (5%) | 7 (4%) | 6 (3%) | 11 (5%) | 9 (6%) | 44 (5%) | 0.665 |
| Marital status | 0.121 | ||||||
| Divorced | 18 (9%) | 8 (4%) | 10 (5%) | 11 (5%) | 8 (5%) | 55 (6%) | |
| Married | 77 (37%) | 85 (45%) | 80 (40%) | 115 (51%) | 64 (42%) | 421 (43%) | |
| Partnered/in a domestic relationship | 46 (22%) | 48 (26%) | 43 (22%) | 52 (23%) | 43 (28%) | 232 (24%) | |
| Single | 62 (30%) | 47 (25%) | 63 (32%) | 46 (20%) | 36 (24%) | 254 (26%) | |
| Widowed | 3 (1%) | 0 (0%) | 4 (2%) | 2 (1%) | 2 (1%) | 11 (1%) | |
| Smoking status | 0.018 | ||||||
| No, never smoker | 104 (50%) | 96 (51%) | 105 (52%) | 132 (58%) | 99 (65%) | 536 (55%) | |
| Yes, current smoker | 30 (15%) | 20 (11%) | 13 (6%) | 19 (8%) | 14 (9%) | 96 (10%) | |
| No, past smoker | 72 (35%) | 72 (38%) | 82 (41%) | 75 (33%) | 40 (26%) | 341 (35%) | |
| Sexually active | 136 (66%) | 137 (73%) | 158 (79%) | 199 (88%) | 142 (93%) | 772 (79%) | <0.001‡ |
| Mental health condition§ | 23 (11%) | 22 (12%) | 11 (6%) | 7 (3%) | 4 (3%) | 67 (7%) | <0.001*‡ |
| Depression§ | 141 (68%) | 98 (52%) | 76 (38%) | 63 (28%) | 29 (19%) | 407 (42%) | <0.001‡ |
| Anxiety§ | 135 (66%) | 97 (52%) | 79 (40%) | 84 (37%) | 36 (24%) | 431 (44%) | <0.001‡ |
| Eating disorder§ | 6 (3%) | 5 (3%) | 7 (4%) | 6 (3%) | 4 (3%) | 28 (3%) | 0.983‡ |
| Diabetes*§ | 13 (6%) | 12 (6%) | 7 (4%) | 7 (3%) | 4 (3%) | 43 (4%) | 0.201‡ |
| Cardiovascular disease§ | 6 (3%) | 7 (4%) | 5 (2%) | 7 (3%) | 3 (2%) | 28 (3%) | 0.897** |
| Stroke§ | 3 (1%) | 2 (1%) | 0 (0%) | 1 (0%) | 3 (2%) | 9 (1%) | 0.297** |
| Hypertension§ | 49 (24%) | 41 (22%) | 39 (20%) | 45 (20%) | 25 (16%) | 199 (20%) | 0.499‡ |
| Hypercholesterolaemia | 37 (18%) | 44 (23%) | 30 (15%) | 28 (12%) | 19 (12%) | 158 (16%) | 0.018‡ |
| Experience with TRT | <0.001 | ||||||
| Never used TRT | 156 (76%) | 140 (74%) | 171 (86%) | 195 (86%) | 145 (95%) | 807 (83%) | |
| Never used, but thinking of using TRT | 50 (24%) | 48 (26%) | 29 (14%) | 31 (14%) | 8 (5%) | 166 (17%) | |
| Heard of TRT | 101 (49%) | 89 (47%) | 88 (44%) | 97 (43%) | 81 (53%) | 456 (47%) | 0.315‡ |
| Access to NHS | 0.254 | ||||||
| No | 47 (23%) | 42 (22%) | 50 (25%) | 49 (22%) | 36 (24%) | 224 (23%) | |
| Yes | 31 (15%) | 26 (14%) | 18 (9%) | 27 (12%) | 30 (20%) | 132 (14%) | |
| Unsure | 128 (62%) | 120 (64%) | 132 (66%) | 150 (66%) | 87 (57%) | 617 (63%) | |
| Access to private healthcare | 0.015 | ||||||
| No | 142 (69%) | 123 (65%) | 130 (65%) | 136 (60%) | 89 (58%) | 620 (64%) | |
| Yes | 12 (6%) | 21 (11%) | 16 (8%) | 23 (10%) | 28 (18%) | 100 (10%) | |
| Unsure | 52 (25%) | 44 (23%) | 54 (27%) | 67 (30%) | 36 (24%) | 253 (26%) | |
| Formally diagnosed with low testosterone | 18 (9%) | 14 (7%) | 6 (3%) | 6 (3%) | 3 (2%) | 47 (5%) | 0.003‡ |
| Willingness to pay for TRT via private healthcare | 73 (35%) | 49 (26%) | 54 (27%) | 71 (31%) | 38 (25%) | 285 (29%) | 0.127‡ |
Lower qADAM score=higher burden of symptoms experienced.
P value refers to χ2 test or Fisher’s exact test for categorical variables or Kruskal-Wallis test for continuous variables.
P value comparing ‘Yes’ vs ‘No’ responses.
Medical conditions/comorbidities were based on respondent self-report.
GCSE, General Certificate of Secondary Education; NHS, National Health Service.
Symptoms experienced by respondents
Each low testosterone-associated symptom and component of the qADAM score, overall and by age group, are shown in table 2. Nearly half (49%) of respondents reported a symptom profile that could be suggestive of TD, with the highest individual symptoms reported to be sports ability (35%), low libido (31%), energy levels (30%) and reduced erectile strength (27%). Older men were also more likely to report higher frequency in nearly all symptoms in comparison to younger men, including libido levels, energy levels, strength/endurance levels, erection strength, sports ability over the past 4 weeks and at least 1.5 inches of height loss. However, only 5% of men overall reported receiving a formal low testosterone diagnosis.
Table 2. Summary of individual low testosterone symptoms, overall and stratified by age group.
| N | Age group (years) | P value* | |||||
|---|---|---|---|---|---|---|---|
| ≤30 | 31–40 | 41–50 | 51–60 | 61+ | Total | ||
| 152 | 221 | 223 | 205 | 172 | 973 | ||
| Overall qADAM score | 30.0 (26.0, 33.0) | 29.0 (25.0, 34.0) | 29.0 (25.0, 32.0) | 28.0 (25.0, 33.0) | 28.0 (25.0, 32.0) | 29.0 (25.0, 33.0) | 0.076 |
| Positive qADAM questionnaire score† | 60 (39%) | 95 (43%) | 102 (46%) | 109 (53%) | 109 (63%) | 475 (49%) | <0.001 |
| Enjoyment of life | 20 (13%) | 31 (14%) | 30 (13%) | 32 (16%) | 13 (8%) | 126 (13%) | 0.199 |
| Happiness levels | 28 (18%) | 37 (17%) | 36 (16%) | 38 (19%) | 15 (9%) | 154 (16%) | 0.073 |
| Libido | 36 (24%) | 55 (25%) | 63 (28%) | 66 (32%) | 80 (47%) | 300 (31%) | <0.001 |
| Energy levels | 32 (21%) | 71 (32%) | 84 (38%) | 56 (27%) | 46 (27%) | 289 (30%) | 0.007 |
| Strength/endurance | 24 (16%) | 46 (21%) | 51 (23%) | 61 (30%) | 49 (28%) | 231 (24%) | 0.013 |
| Erection strength | 21 (14%) | 37 (17%) | 45 (20%) | 70 (34%) | 91 (53%) | 264 (27%) | <0.001 |
| Work performance over the past 4 weeks | 28 (18%) | 43 (19%) | 42 (19%) | 43 (21%) | 45 (26%) | 201 (21%) | 0.366 |
| Sports ability over the past 4 weeks | 42 (28%) | 62 (28%) | 81 (36%) | 81 (40%) | 74 (43%) | 340 (35%) | 0.004 |
| Height lost | 3 (2%) | 11 (5%) | 6 (3%) | 5 (2%) | 14 (8%) | 39 (4%) | 0.016 |
| Frequency falling asleep | 14 (9%) | 28 (13%) | 29 (13%) | 23 (11%) | 25 (15%) | 119 (12%) | 0.644 |
P value refers to χ2 test or Fisher’s exact test for categorical variables or Kruskal-Wallis test for continuous variables. For categorical outcomes, ‘Yes’ denotes participants rating the symptom as ‘terrible’ or ‘poor’; p values compare ‘Yes’ versus ‘No’ responses.
The positive qADAM questionnaire score was defined as an individual rating “terrible” or “poor” for libido or erection strength, any three other questions (energy levels, strength/endurance, enjoyment of life, happiness levels, work performance over the past 4 weeks, frequency falling asleep, sports ability over the past 4 weeks and height lost).
Univariable and multivariable associations of age groups with likelihood of having ‘positive’ qADAM questionnaire scores
Table 3 shows the associations between age and burdens of symptoms that can be associated with TD. Univariable logistic regressions suggested that older men were 1.6–2.43 times more likely to have positive qADAM questionnaire results, compared with younger men (OR51-60 years vs <40 years:1.6, p=0.007; OR60+years vs <40 years:2.43, p<0.001). Multivariable regressions adjusting for ethnicity, education level, marital status and employment status confirmed these findings, where men older than 50 years were 1.54–2.04 more likely to have positive qADAM scores compared with men aged 40 years or younger (OR51-60 years vs <40 years:1.54, p=0.05; OR60+years vs <30 years:2.04, p=0.001).
Table 3. Associations between age group and likelihood of having a positive qADAM score, that is, a symptom burden that could trigger consideration of TD*.
| Age group (years) | Univariable | Multivariable† | ||||
|---|---|---|---|---|---|---|
| OR | 95% CI | P value | OR | 95% CI | P value | |
| ≤40 | 1 (Ref) | 1 (Ref) | ||||
| 41–50 | 1.19 | 0.84, 1.66 | 0.318 | 1.25 | 0.88, 1.78 | 0.209 |
| 51–60 | 1.60 | 1.13, 2.25 | 0.007 | 1.54 | 1.07, 2.20 | 0.019 |
| 61+ | 2.43 | 1.68, 3.53 | <0.0001 | 2.04 | 1.34, 3.08 | 0.001 |
As assessed by an individual rating ‘terrible’ or ‘poor’ for libido OR erection strength OR any three other questions (energy levels, strength/endurance, enjoyment of life, happiness levels, work performance over the past 4 weeks, frequency falling asleep, sports ability over the past 4 weeks, and height lost).
Adjusted for ethnicity, marital status, employment status and education.
Awareness of TD symptoms and treatment options
Despite the high prevalence of reported TD-associated symptoms, over half (55%) of respondents were unaware of signs and symptoms associated with low testosterone, with 47% unaware of available treatment options like TRT (online supplemental file 4). Individuals aged 40 years or older were significantly 0.51 times less likely to have heard of TRT compared with those aged 40 years or younger (OR40+years vs <40 years: 0.51, p<0.001; data not shown).
Barriers to seeking medical advice or treatment
The most reported barriers to individuals seeking medical advice or treatment for symptoms related to low testosterone were being unaware of symptoms (39%), financial costs (35%), stigma around hormonal health (29%) and lack of time (26%). Only 7% of individuals noted satisfaction with their access to available low testosterone resources in the UK. While only 29% of individuals indicated willingness to pay for TRT via private healthcare, most individuals were interested in trying TRT if it were free of charge (91%).
When considering treatment, the principal factors related to how TRT would impact personal relationships were intimacy and communication (48%) and the importance of maintaining a natural hormone balance without external interventions like TRT (42%). Societal perceptions of masculinity and the acceptance of TRT were less important (21% and 15%, respectively), although younger men were significantly more likely to place higher importance on these factors when considering TRT (χ2 test, p<0.05).
When asked about potential side effects that would prevent individuals from trying TRT, key identified factors were risk of CVD (69%), blood thickening (67%), hair loss (52%) and gynaecomastia (50%). Younger individuals expressed more concerns about the impact of TRT on potential sexual and topical side effects (non-cancerous prostate growth, limiting sperm production, shrunken testes, acne and hair loss; χ2 p<0.05), whereas older adults were significantly more apprehensive about serious health risks (non-cancerous prostate growth, blood thickening which could increase the risk of blood clots and hypercholesterolaemia; χ2 test p<0.05).
Perceptions of low testosterone treatments among social circles
Concerns raised by social circles included fear of unknown health risks, perceived impact on masculinity, lack of trust in medical interventions and financial considerations, which were more prevalent among younger individuals (χ2 test, p<0.05).
Sources of low testosterone advice
Most respondents relied on online sources (82%) to learn more about low testosterone, particularly Google (80%), followed by consultations with a healthcare professional (69%; 65% of which specifically sought contact with their general practicioner (GP). The vast majority (86%) did not seek conversations around hormonal health among their social circles. Younger individuals were more likely to use online forums and social media (particularly Google, YouTube and general online websites) as their trusted source of information around hormonal health and treatment options including TRT (χ2 test p<0.01).
Key expectations during discussions with healthcare providers around TRT treatment included clear communication about potential risks and benefits (84%), indepth discussion about the potential causes of low testosterone (69%), duration of treatment (64%), guidance on lifestyle modification (62%), discussion of alternative treatment options (55%) and cost considerations (51%). The primary drivers for individuals to start exploring TRT were access to more detailed information on potential benefits (75%), insights into long-term effects and safety (67%) and success stories and testimonials from TRT users (42%).
Discussion
Summary of key findings
We analysed data collected from 973 British adult men aged 18–86 years without TRT experience and found that almost half of all respondents exhibited symptom profiles that could be associated with TD. However, over 95% did not have a formal TD diagnosis, suggesting a complex situation of phenomena including low symptom awareness and symptom non-specificity. Although older men had a higher likelihood of a positive qADAM score (as per our study’s clinically guided cut-off), we found that they were also more likely to be unaware of the signs and symptoms associated with low testosterone compared with men under 40 years. The most prevalent symptoms reported included low libido, reduced erection strength and reduced sports ability, whereas men experiencing the most TD-associated symptoms also had higher BMI, poorer overall health and reduced health-seeking behaviours.
Comparison with the existing literature
Our research findings align with the existing literature regarding public experiences and sentiment towards low testosterone symptoms and treatment. The British Society of Sexual Medicine reported that TD prevalence widely varies and is more common among older men, particularly those with obesity, type 2 diabetes and other comorbidities, in addition to general poor health status or greater reliance on medication.4 The European Male Ageing Study and the Massachusetts Male Aging Study observed reductions in testosterone production and testicular function by 1–2% per year after men approached their fifth decade.14 15
Several barriers were identified to initiating TRT, including a lack of awareness of signs and symptoms and stigma around hormonal health interventions. Other qualitative studies have reported similar findings, identifying major obstacles as lack of awareness and knowledge of TD-associated symptoms, access or awareness of appropriate services, shame and embarrassment during discussions between men and GPs and perceiving sexual dysfunction as part of normal ageing or of trivial significance.16 17 There may also be a lack of unified messaging in addressing the symptomatic challenges associated with TD; a collaborative and patient-centred approach should be developed to optimise patient outcomes.18
Online resources were identified as leading sources of advice on TD and TRT. Telemedicine, asynchronous consultations and online resources have the potential to play a critical role in addressing social stigma surrounding TD, facilitating timely care and enhancing health literacy.19 20 By normalising discussions around men’s health and improving patient education around clinical signs and health implications of TD, these tools can empower patients to better communicate their needs to caregivers and healthcare providers. This increase in engagement may help correct misconceptions, reduce stigma and foster greater social acceptance. Ultimately, enhanced awareness and acceptance are likely to improve access to care and lower healthcare costs by reducing unnecessary outpatient visits.21
Implications for policy, practice and research
Many men may be unaware that their symptoms could be associated with TD and are treatable, or they are deterred from seeking support due to additional barriers such as personal discomfort, societal stigmas, lack of information or financial constraints. This lack of action contributes to undiagnosed and untreated hypogonadism, which not only impacts individual health but also results in significant direct and indirect costs through increased burden of comorbidities, increased National Health Service (NHS) healthcare costs and reduced overall quality of life.19 Addressing these challenges could have widespread implications on society. Given the associations between TD and healthy longevity, appropriate and effective intervention for TD could have benefits for the economy; quantification of this requires further health economic analyses. However, such changes demand a multifaceted approach: improving education among health professionals, particularly general practitioners, is crucial; this could involve integrating TD training into medical education curricula (as is with HRT) and into professional development programmes, ensuring the GPs are more equipped to appropriately identify and discuss TD-associated symptoms during routine appointments. In addition, integrating testosterone screening into these check-ups, particularly for men over 50 years (who are at higher risk), may significantly improve early detection and intervention.
Public health initiatives aimed at raising awareness of low testosterone, its symptoms and accessibility of available treatments are also needed. In addition to providing general information around TD, these initiatives should also be specifically targeted towards challenging existing stereotypes and encouraging men to feel more comfortable in proactively seeking help. Leveraging online resources and telemedicine platforms can further bridge the knowledge gap and reduce the stigma associated with seeking medical support, making information and consultations more accessible, particularly for those who may avoid inperson visits due to discomfort or financial restraints. Policy reforms aimed at reducing out-of-pocket costs for patients, such as providing subsidies for TD treatment or including treatments in standard NHS packages, should be explored to ensure men from diverse socioeconomic backgrounds have access to care.
Future research is needed to explore the economic implications of untreated TD and to assess the efficacy of educational and support interventions. The research should also examine specific barriers faced by different socioeconomic groups when accessing treatment. These findings would provide evidence to inform policy changes and improve clinical practices, ultimately reducing disparities and alleviating the burden on the NHS. Radical changes in how we approach men’s health need to be considered at a clinical, population health and policy level to enact system-wide change. Given the increasing focus on age-related hormonal changes in the last 5 years, as seen in menopause, a similar emphasis is needed towards men’s health. This starts with acknowledging the knowledge gap in research, ring-fenced funding for men’s hormonal health in science and the NHS (for example, dedicated primary care men’s health hubs, formalised training for all healthcare professionals); and a policy shift away from reactive management of conditions towards proactive healthcare that enables healthy ageing.
Strengths and limitations
To our knowledge, this is the first quantitative study to investigate the perceptions, attitudes and behaviours around TD and the associated health and lifestyle factors influencing symptoms and well-being among community dwelling men in the UK and includes a large sample size of 973 participants. We acknowledge several limitations. First, the electronic distribution of the survey may have inadvertently excluded individuals with limited digital access. Second, the cross-sectional nature of the study precludes the determination of causality between variables, and our reliance on self-reported data may introduce bias as participants’ responses may be influenced by social desirability or lack of understanding around hormonal health. Third, although our sample is diverse, the demographic profile of study participants largely consisted of white and university-educated men, which may not be representative of the wider UK population. The average body mass index of men in this sample was comparatively low relative to the UK average, which could also affect generalisability. Generalisability may also be limited by potential selection bias of recruiting respondents via the groups and networks used—for example, men on mailing lists of men’s health-focussed organisations may have different characteristics to the wider population. Fourth, as an observational study, there is also the risk of confounding bias—this study performed unadjusted modelling analyses and repeated these with adjustment for selected demographic features, but there may be other unmeasured confounders. We also note that the qADAM questionnaire has not been robustly validated as an instrument, with some evidence that it may have suboptimal specificity for TD.22 However, for the purposes of this study (quantifying the burden of symptoms that could be linked to TD), we believe that its capture of key domains of clinical symptomatology provides useful information. Finally, a key symptom of TD is low libido—this is a multifactorial phenomenon with a number of potential causes including mental health, mood and other comorbidities.
Conclusions
In this survey of almost 1000 adult men in the UK, we identified that: (1) almost half of men have symptom profiles that could be associated with TD; (2) less than 5% of men reported ever receiving a formal diagnosis of TD; (3) over half of respondents reported limited-to-no understanding of the symptoms of this condition; and (4) men with more florid TD-associated symptoms report reduced health-seeking behaviours. Together, these allude to important disparities in men’s health. TD can have symptoms that are non-specific, but it has significant impacts on quality of life and healthy longevity. In the context of underdiagnosis of this increasingly recognised condition, future research should focus on methods to more accurately identify men at high risk of having TD, thereby improving appropriate access to diagnostics and care.
Supplementary material
Acknowledgements
The authors wish to thank staff at Menwell Ltd for their support in survey beta testing and development.
Footnotes
Funding: This research received no funding. Austen El-Osta and Benedict Hayhoe are supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) Northwest London. The views expressed are those of the authors and not necessarily those of the NHS or the NIHR or the Department of Health and Social Care.
Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2024-094145).
Provenance and peer review: Not commissioned; externally peer reviewed.
Patient consent for publication: Not applicable.
Ethics approval: This study involves human participants and the Imperial College Research Ethics Committee (ICREC) granted ethical clearance for this study (ICREC#6990009). Participants gave informed consent to participate in the study before taking part.
Patient and public involvement: Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.
Data availability statement
No data are available.
References
- 1.Harman SM, Metter EJ, Tobin JD, et al. Longitudinal effects of aging on serum total and free testosterone levels in healthy men. Baltimore Longitudinal Study of Aging. J Clin Endocrinol Metab . 2001;86:724–31. doi: 10.1210/jcem.86.2.7219. [DOI] [PubMed] [Google Scholar]
- 2.Wittert G, Grossmann M. Obesity, type 2 diabetes, and testosterone in ageing men. Rev Endocr Metab Disord. 2022;23:1233–42. doi: 10.1007/s11154-022-09746-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Grossmann M. Low testosterone in men with type 2 diabetes: significance and treatment. J Clin Endocrinol Metab. 2011;96:2341–53. doi: 10.1210/jc.2011-0118. [DOI] [PubMed] [Google Scholar]
- 4.Hackett G, Kirby M, Rees RW, et al. The British Society for Sexual Medicine Guidelines on Male Adult Testosterone Deficiency, with Statements for Practice. World J Mens Health. 2023;41:508–37. doi: 10.5534/wjmh.221027. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Lincoff AM, Bhasin S, Flevaris P, et al. Cardiovascular Safety of Testosterone-Replacement Therapy. N Engl J Med. 2023;389:107–17. doi: 10.1056/NEJMoa2215025. [DOI] [PubMed] [Google Scholar]
- 6.Allan CA, McLachlan RI. Age-related changes in testosterone and the role of replacement therapy in older men. Clin Endocrinol (Oxf) 2004;60:653–70. doi: 10.1111/j.1365-2265.2004.02002.x. [DOI] [PubMed] [Google Scholar]
- 7.Araujo AB, Esche GR, Kupelian V, et al. Prevalence of symptomatic androgen deficiency in men. J Clin Endocrinol Metab. 2007;92:4241–7. doi: 10.1210/jc.2007-1245. [DOI] [PubMed] [Google Scholar]
- 8.Huang DR, Goodship A, Webber I, et al. Experience and severity of menopause symptoms and effects on health-seeking behaviours: a cross-sectional online survey of community dwelling adults in the United Kingdom. BMC Womens Health . 2023;23:373. doi: 10.1186/s12905-023-02506-w. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310:2191–4. doi: 10.1001/jama.2013.281053. [DOI] [PubMed] [Google Scholar]
- 10.Prolific. https://www.prolific.com Available.
- 11.Mohamed O, Freundlich RE, Dakik HK, et al. The quantitative ADAM questionnaire: a new tool in quantifying the severity of hypogonadism. Int J Impot Res. 2010;22:20–4. doi: 10.1038/ijir.2009.35. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Eysenbach G. Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) J Med Internet Res. 2004;6:e34. doi: 10.2196/jmir.6.3.e34. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.von Elm E, Altman DG, Egger M, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61:344–9. doi: 10.1016/j.jclinepi.2007.11.008. [DOI] [PubMed] [Google Scholar]
- 14.Wu FCW, Tajar A, Pye SR, et al. Hypothalamic-pituitary-testicular axis disruptions in older men are differentially linked to age and modifiable risk factors: the European Male Aging Study. J Clin Endocrinol Metab. 2008;93:2737–45. doi: 10.1210/jc.2007-1972. [DOI] [PubMed] [Google Scholar]
- 15.Feldman HA, Longcope C, Derby CA, et al. Age trends in the level of serum testosterone and other hormones in middle-aged men: longitudinal results from the Massachusetts male aging study. J Clin Endocrinol Metab. 2002;87:589–98. doi: 10.1210/jcem.87.2.8201. [DOI] [PubMed] [Google Scholar]
- 16.David J, Charles A. Barriers to diagnosis and accessing effective treatment and support for testosterone deficiency. J Men’s Health. 2024;1:10. [Google Scholar]
- 17.Gott M, Hinchliff S. Barriers to seeking treatment for sexual problems in primary care: a qualitative study with older people. Fam Pract. 2003;20:690–5. doi: 10.1093/fampra/cmg612. [DOI] [PubMed] [Google Scholar]
- 18.Sizar O, Leslie SW, Schwartz J. Male Hypogonadism. 2024. [PubMed]
- 19.Anawade PA, Sharma D, Gahane S. A Comprehensive Review on Exploring the Impact of Telemedicine on Healthcare Accessibility. Cureus. 2024;16:e55996. doi: 10.7759/cureus.55996. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Fitzpatrick PJ. Improving health literacy using the power of digital communications to achieve better health outcomes for patients and practitioners. Front Digit Health . 2023;5:1264780. doi: 10.3389/fdgth.2023.1264780. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Troesch VL, Juhr D, Pearlman A. Barriers to receiving testosterone replacement therapy in the community during COVID-19 pandemic. Transl Androl Urol. 2021;10:3312–6. doi: 10.21037/tau-21-350. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Bernie AM, Scovell JM, Ramasamy R. Comparison of questionnaires used for screening and symptom identification in hypogonadal men. Aging Male. 2014;17:195–8. doi: 10.3109/13685538.2014.963041. [DOI] [PubMed] [Google Scholar]
