Abstract
Background
Men with multiple sclerosis (MwMS) experience distinct health, symptoms, and disease progression patterns compared to women, necessitating targeted research and clinical approaches.
Objectives
We aimed to evaluate the perceived relative importance of topics in men's health for future research in this area and sought to understand research priorities and sources of information among MwMS.
Methods
In a cross-sectional survey, male participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry ranked research priorities among 14 men's health-specific topics. The online survey contained additional questions on information-seeking behavior and preferences, adapted from the 2007 Health Information National Trends survey. Multivariate linear regression examined factors associated with topic rankings.
Results
Of 8567 participants invited, 5098 (59.3%) responded, of whom 896 were males; 775 were included. Sexual function/dysfunction ranked as the highest priority men's health topics followed by prostate cancer/cancer screening, benign prostatic hyperplasia, and low testosterone. These topics were the most frequently searched topics by participants, and the most frequent source used was mass media.
Conclusion
We identified priority research topics for men's health issues in MS from the perspective of MwMS. Continued engagement of MwMS as partners in refining research questions and communicating results will ensure the outcomes remain relevant to those who seek them.
Introduction
Multiple sclerosis (MS) is a chronic neuroinflammatory disease affecting over 2.8 million individuals globally, with substantial physical, cognitive, and psychological burdens. 1 The prevalence of MS is higher in women compared to men with an estimated ratio of 2–3 to 1. In addition to differences in disease susceptibility between men and women, differences in clinical presentation and outcome have been observed. Men are more frequently diagnosed at older ages and with progressive disease at onset compared to women. 2 Studies also indicate that men with MS (MwMS) experience distinct symptoms and disease progression patterns compared to women, necessitating targeted research and clinical approaches. 3
While the research in men's health in MS is limited, previous studies have focused mostly on sexual and reproductive health in men. 4 A recent scoping review identified 34 studies published over the past 20 years primarily focused on sexual function, including erectile dysfunction. 4 However, few studies on reproductive health, specifically fertility and family planning were found. Most studies were cross-sectional and conducted in European populations. Infertility and reproductive challenges are better documented in the women's health scoping review, 5 yet there is a paucity of data regarding these issues in MwMS.2,4,6 As persons with MS are living longer, other issues to be considered include those associated with aging such as cancer.
These knowledge gaps in the areas of men's health are important to address to inform future research and care, but the relative importance of these areas for MwMS is unknown. The relevance, quality, uptake and impact of research conducted by the MS community could be improved by incorporating the perspectives of men living with MS into priority setting for research.7,8 Also, once research results are available, the dissemination of this health information is critically important. Our prior work showed that information needs of people with MS varied and may change over the disease course. 9 Therefore, we aimed to evaluate the research priorities in men's health for future research in this area using a survey of MwMS. We also sought to understand sources of information about men's health used by MwMS.
Methods
Study design
This study utilized cross-sectional data from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. The NARCOMS Registry is a self-report registry specifically for individuals with MS. 10 Participants complete initial questionnaires upon enrollment and update their sociodemographic and clinical details semiannually; either by mail or online, based on their preference. Consent to the use of their anonymized data for research purposes is provided by each participant. At the time of this study, the Institutional Review Board at UT Southwestern provided human subjects protection for the registry.
Men's health priorities and information seeking
In the NARCOMS spring 2022 semi-annual survey, male participants ranked their top five research areas related to men's health in MS. The men's health topics included benign prostatic hyperplasia (BPH), sexual dysfunction, low testosterone levels, puberty, parenthood, family planning services, sex hormones, prostate cancer and screening, fertility, assisted reproduction, sexually transmitted diseases, sexual orientation, gender identity, and intimate partner violence. These areas of research were aligned with similar questions examining women's health. 11 Participants could also suggest other research priority topics.
As part of the spring 2022 survey, online participants were invited to answer additional questions regarding where participants obtained health-related information specifically for the health topics listed above. These questions were adapted from the 2007 Health Information National Trends (HINTS) survey developed by the National Cancer Institute, similar to our prior survey on information sources and seeking in MS.9,12 Participants were asked about the source of information used the most recent time they looked for information about men's health topics related to MS, their experiences during their most recent information search, confidence in obtaining information or advice on these topics, likelihood of seeking advice/support from individuals in their lives on these research topics, and their preference in receiving health information. Information source used for the most recent time the participant looked for information was reported for each individual topic. Only one choice could be selected and was categorized as interpersonal (family, provider, friend, patient advocacy organization 10 ) or mass media sources (books, newspapers, brochures, library, magazines, Internet). Sources of information likely to be used and preferences for format of sources were categorized as not likely or preferred (0, 1, 2), moderately likely or preferred (3, 4, 5), or very likely or preferred (6, 7, 8).
Sociodemographic and clinical characteristics
The enrollment questionnaire collected data on participants’ date of birth (used to calculate age), race, ethnicity, education level, gender, age at MS symptom and disease onset (used to determine disease duration). The spring 2022 questionnaire gathered information on annual household income, disability severity, and current clinical course. Race was classified as White, African American/Black, and other. Education levels were grouped into high school/General Educational Development, and post-secondary (including associate's degree, bachelor's degree, post-graduate education, and technical degree). Annual household income was divided into <$50,000 and >$50,001 categories. Alcohol consumption was categorized into never, up to 2–4 times a month, and more than two times a week. Disability status was assessed using the patient-determined disease steps (PDDS), a single-item measure with eight possible responses ranging from 0 (normal) to 8 (bedridden).
Analysis
Participants were eligible for the analysis if their age was known and they ranked at least one topic on men's health. We also restricted our analysis to participants living in the USA due to variability in the availability of health care information sources and health care systems outside the USA. Participants who agreed to participate in the additional questions on information sources were included. Missing responses were not imputed. Some participants did not respond to all questions; therefore, we report the number of individuals responding to each question throughout. Statistical analyses were performed using SAS V9.4 (SAS Institute Inc., Cary, NC, USA).
Survey responses were summarized using descriptive statistics summarized including mean [standard deviation (SD)], median [interquartile range] and frequency (percent). Because the outcome variables were ordinal, we rank ordered the responses before including them in the model. Options not cited in the top five-ranked options were assigned a value of six before the ranking was conducted. 11 The final survey rankings were analyzed to determine the highest priority men's health topics among participants. We examined patterns of responses according to respondent characteristics using multivariate analysis of covariance (MANCOVA) with Pillai's trace as the test statistic. Independent variables from the survey were age (continuous), education, income, race, alcohol intake, physical activity, smoking status, disease modifying therapy (DMT) use, number of physical comorbidities, depression, anxiety, and disability status as defined by PDDS. Model assumptions (multivariate normality, linearity of relationships between dependent variables, and homogeneity of variance and covariance) were assessed using standard methods.
Results
The NARCOMS spring 2022 survey was sent to 8567 total participants of which 5098 (59.3%) responded. Non-responders were described previously. 11 In brief, non-responders were slightly younger on average, less likely to identify as White, lower level of education, and more severe disability. Additionally, male respondents were similar to female respondents for this survey (Table e1 in the supplementary materials). Among respondents, 896 were males and 775 met the study inclusion criteria (Figure 1). The additional questions on information seeking were completed by 343 participants of the 624 online male respondents (55.0%).
Participant disposition.
The cohort had a mean (SD) age of 66.7 (8.7) years, was predominantly White (89.5%) and 77.3% reporting bachelor's degree or higher. The median (25th, 75th) PDDS level was mild disability (mild disability, moderate disability). Those completing the information source questions were generally similar to the overall cohort; having a mean age of 65.5 (9.1), 90.1% White, 82.2% having a bachelor's degree or higher and median disability level of mild disability (Table 1). Participants who responded to the information sources questions were similar to responders although non-responders were slightly younger, had lower income, were less likely to take a DMT, more disability, and were less likely to be physically active (Table e2 in the supplementary materials).
Participant characteristics.
Factors associated with priority rankings in MANCOVA analysis.
Research priorities
Overall, sexual function/dysfunction ranked as the highest priority of the 14 men's health topics considered, followed by prostate cancer and its screening, BPH, and low testosterone (Figure 2). Parenthood and sex hormones were ranked fifth and sixth with the remaining topics receiving a smaller number of priority rankings (<2%). Over 30% of respondents ranked sexual function as their highest-ranked topic and 21% ranked prostate cancer as their highest priority. Other areas participants suggested were aging with MS, bladder and bowel dysfunction, sexual function and intimacy, mental health and identity, comorbid medical conditions, treatment side effects, lifestyle and rehabilitation strategies, and cognitive and neurologic symptoms.
Men's health research topic priority rankings.
Considering the priorities by age, sexual function/dysfunction and prostate cancer and its screening were consistently the first and second ranked priorities (Figure 3). However, younger men (18–55) ranked low testosterone third and not surprisingly assigned higher importance to fertility and parenthood than older men did. In the multivariate analysis, participant age was the only factor associated with different priority rankings among the 14 topics (Table 2). In models evaluating the individual factors with the rankings of each topic, age was associated with the rankings for BPH, parenthood family planning services, and fertility (Table 2).
Men's health research topic priority rankings by age group.
Information-seeking behaviors
Among participants completing the follow-up questionnaire, the information-seeking behavior aligned with the rankings where sexual function/dysfunction was the most frequently searched topic (35.6%) followed by prostate cancer and its screening (22.3%), benign prostatic hyperplasia (22.2%), and low testosterone (20%). Hormone information was sought by 9.5% of participants, while topics such as parenthood-related information (5.2%), sexually transmitted diseases (3.1%), sexual orientation (2.8%), gender identity (1.2%), intimate partner violence (0.9%), fertility (0.6%), assisted reproduction (0.6%), family planning services (0.3%), and puberty (0%) were infrequently searched. When participants searched for information on sexual dysfunction, benign prostatic hyperplasia, and low testosterone, mass media was used by almost two-thirds of the participants as the source of information (Table e3 in the supplementary materials). Information on prostate cancer and prostate cancer screening was sought from interpersonal sources by 56% of participants.
Search experience, support, and preferences
For participants reporting on their most recent information search experience, a notable number of participants had concerns regarding their search. Over a third of participants were concerned about the quality of information (37.1%) and 28.1% felt that it took a lot of effort to obtain the information, while 23.1% were frustrated during their search and 17.3% thought the information that was found was hard to understand. Participants indicated they were likely to talk to their family doctor (78.1%), MS doctor (75.7%), or partner (59.0%) for advice or support when seeking information on these topics. Preferred formats for information on men's health topics were discussions with healthcare providers (MS provider, 69.8%; general provider, 60.9%), written material (55.2%) and a recommended Internet website which could be reviewed later (47.3%).
Discussion
Overall, our study highlights research priorities for MwMS and identified sexual function/dysfunction as the highest priority issue among participants after adjusting for differences in demographic and clinical factors. Other areas of high priority were aging-related health issues such as prostate cancer and its screening and BPH. Beyond health topics, this work sheds light on information-seeking behaviors of MwMS. For those that had sought information on men's health, the most frequent areas aligned with the research priorities. Mass media was a common source for finding information except for prostate cancer and screening which had a higher proportion using interpersonal sources such as primarily healthcare providers. Preferred sources for obtaining information on health topics among participants included discussions with healthcare providers, and information in the form of written material and recommended internet sites.
Sexual health is an important aspect of health and well-being. Sexual problems are common in MwMS but often go under-recognized and under-treated. In a recent systematic review, the pooled prevalence of sexual dysfunction in MwMS across 20 studies was 62.9% (95% CI: 53‒72.7). 13 Common sexual problems among MwMS include erectile dysfunction, ejaculatory dysfunction, and decreased libido. 14 This study also observed only 6% of the patients had discussed these issues with a provider or undergone therapy. 14 Sexual dysfunction can arise directly from demyelination (primary), from MS-related symptoms such as fatigue (secondary), and psychosocial consequences (tertiary). 15 These different domains may require distinct clinical approaches and more complex treatment strategies compared to the general population. Further work is needed to identify the different aspects of sexual function of interest by MwMS that need to be addressed.
Beyond sexual dysfunction, age-related urological issues featured heavily in men's priorities—notably prostate cancer and BPH. These priorities likely reflect, in part, the older age of our cohort as well as the intersection of MS with concerns common with male aging. By age 70, up to 80% of men develop BPH, 16 and prostate cancer is the second most common cancer in men worldwide. MwMS may face a dual challenge: managing MS-related bladder dysfunction alongside BPH-related lower urinary symptoms, which can be difficult to distinguish and together can significantly impair quality of life. 16 This intersection calls for coordinated care approaches between neurology and urology. Importantly, MS specialists should consider prostate health in their male patients and ensure they receive recommended screening. 17 Conversely, urologists treating MwMS should recognize how MS-related neurogenic bladder and sexual dysfunction might confound typical presentations of BPH or prostate cancer. A matched cohort study in Ontario, Canada, showed that MwMS were less likely to be diagnosed with prostate cancer but when diagnosed had similar mortality rates. 18 This suggests that MwMS are undergoing less screening; since prostate cancer is considered a screen-sensitive condition. 19 The high prioritization of these topics by our participants indicates a need for increased care coordination and continued research in these areas.
Low testosterone was another highly ranked topic. In one study, low testosterone levels affected 39% of men for a range of ages, although the low levels may reflect aging as well as other poorly understood factors.20,21 Low testosterone (hypogonadism) can contribute to fatigue, depression, and sexual dysfunction—symptoms that overlap with those caused by MS. Few studies have tested the effect of testosterone on MS. A small trial of testosterone gel in MwMS showed it was safe and slowed brain atrophy while improving cognition. 22 Our participants’ interest in sex hormones and MS outcomes as well as low testosterone indicates that this is an area needing further research.
Topics like fertility, family planning, and parenting were lower priorities overall, but this varied by age. Not surprisingly, older ages ranked this as a lower priority compared to younger ages possibly reflecting that older men have usually completed building their families and may view these topics as less personally relevant. However, among the minority of younger MwMS, fertility and parenthood were rated more highly. MS onset in men often occurs in the 20 s or 30 s, which typically coincides with family planning decisions. There is sparse literature on male fertility in MS—for example, how MS or its treatments (such as disease-modifying therapies) might affect male reproductive function or pregnancy outcomes. 23 One study noted that men's reproductive health in MS is under-addressed and that communication barriers exist, with men hesitating to discuss these concerns with providers. 4 Sexual orientation and gender identity were lower-priority topics. Future work should specifically include younger MwMS to better understand their unmet needs around fertility, career, and family life impacts—aspects that may have been under-emphasized here due to our older sample. Similarly, engaging men from more diverse backgrounds (racial/ethnic minorities, Lesbian, Gay, Bisexual, Transgender, and Queer/Questioning) in qualitative or quantitative research could reveal additional priorities or different experiences with information access and support.
Participants indicated a preference for receiving information through discussions with healthcare professionals, especially MS specialists, and mass media (e.g., written sources and recommended websites). This is consistent with prior findings in NARCOMS, the general population, and related to other conditions such as depression.9,24,25 Online information is accessible and anonymous, which might appeal to men who are sometimes reluctant to seek medical help or discuss personal issues in person. 15 This widespread use of the internet for medical education underscores a need for high-quality, MS-specific online resources tailored to men's health topics. Over one-quarter of participants had concerns regarding the quality and understandability of online information.
Our study has several limitations that should be considered. The cohort was predominantly older, White, highly-educated, and of long disease duration, which may limit generalizability to younger, more diverse, or newly diagnosed MwMS. The survey was conducted in a single voluntary registry, and the results may not generalize to the wider male MS community. Some selection bias for the detailed information-seeking questions could be present as this was an optional set of questions asked only of those participants taking the survey online due to space and time constraints. The cross-sectional design captures priorities at one point in time; we were unable to assess how priorities or behaviors might change over the course of the illness or with aging. The list of research topics, while based on prior literature, may not be comprehensive and it is possible some areas of importance to MwMS were not explicitly listed and ranked. However, these findings are consistent with more general search trends in the USA on men's health topics. 26 Finally, while we identified what sources men use and prefer, we did not objectively assess the accuracy or relevance of the information they obtained from those sources.
Conclusion
We identified high-priority research topics for men's health issues in MS from the perspective of MwMS. The areas of highest interest include sexual function, prostate cancer and prostate cancer screening and BPH. As the MS population ages and more men face the dual burden of MS plus common age-related male health issues, addressing these priorities will be increasingly important for providing comprehensive, patient-centered care. Our study highlights preferences in sources and format of information and that MwMS have concerns about the quality and understandability of available information online. Continued engagement of MwMS as partners in refining research questions and communicating results will ensure the outcomes remain relevant to those who need them.
Supplemental Material
sj-docx-1-mso-10.1177_20552173261447999 - Supplemental material for Men's health research priorities in men with multiple sclerosis
Supplemental material, sj-docx-1-mso-10.1177_20552173261447999 for Men's health research priorities in men with multiple sclerosis by Amber Salter, Mudita Sharma, Gary R Cutter, Ruth Ann Marrie and Robert J Fox in Multiple Sclerosis Journal – Experimental, Translational and Clinical
Footnotes
Acknowledgements
NARCOMS is a project of the Consortium of Multiple Sclerosis Centers (CMSC). NARCOMS is funded in part by the CMSC and the Foundation of the CMSC. The study was also supported in part by the Multiple Sclerosis Clinical Research Chair (to RAM).
Data availability
The data sets generated and analyzed during this study are held by the NARCOMS registry (narcoms.org).
Declaration of conflicting interests
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: A. Salter receives research funding from the National Multiple Sclerosis Society, CMSC and the Department of Defense Congressionally Directed Medical Research Program, is a member of editorial board for Neurology, she serves as a consultant for Gryphon Bio, LLC, Abata Therapeutics and Sora Neuroscience and has equity in Owl Therapeutics, is a member of the Data and Safety Monitoring Board for Central Vein Sign: A Diagnostic Biomarker in Multiple Sclerosis (CAVS-MS), Video Telehealth Pulmonary Rehabilitation to Reduce Hospital Readmission in Chronic Obstructive Pulmonary Disease (Tele-COPD), P3 EQUATE Health Equity Research Network and Methotrexate treatment of Arthritis caused by Chikungunya virus (MARCH), and holds the Kenney Marie Dixon-Pickens Distinguished Professorship in Multiple Sclerosis Research.
M. Sharma reports no disclosures relevant to the manuscript.
G. Cutter serves on Data and Safety Monitoring Boards for Applied Therapeutics, AI therapeutics, AMO Pharma, Argenx, Astra-Zeneca, Avexis Pharmaceuticals, Bristol Meyers Squibb, CSL Behring, Cynata Therapeutics, DiamedicaTherapeutics, Horizon Pharmaceuticals, Immunic, Inhibrix, Karuna Therapeutics, Kezar Life Sciences, Medtronic, Merck, Meiji Seika Pharma, Mitsubishi Tanabe Pharma Holdings, Prothena Biosciences, Novartis, Pipeline Therapeutics (Contineum), Regeneron, Sanofi-Aventis, Teva Pharmaceuticals, United BioSource LLC, University of Texas Southwestern. He serves on Consulting or Advisory Boards for Alexion, Antisense Therapeutics/Percheron, Avotres, Biogen, Clene Nanomedicine, Clinical Trial Solutions LLC, Endra Life Sciences, Cognito Therapeutics, Genzyme, Genentech, Immunic, Klein-Buendel Incorporated, Kyverna Therapeutics, Inc., Linical, Merck/Serono, Noema, Neurogenesis, Perception Neurosciences, Protalix Biotherapeutics, Regeneron, Revelstone Consulting, Roche, SAB Biotherapeutics, Sapience Therapeutics, Scott&Scott LLP, Tenmile. Dr Cutter is employed by the University of Alabama at Birmingham and President of Pythagoras, Inc. a private consulting company located in Birmingham AL.
R.A. Marrie receives research funding from: CIHR, MS Canada, Crohn's and Colitis Canada, National Multiple Sclerosis Society, CMSC, the Arthritis Society, Public Health Agency of Canada, MMSF, CHRIM, Pfizer Foundation and the US Department of Defense, is a co-investigator on studies receiving funding from Biogen Idec and Roche Canada, holds the Multiple Sclerosis Clinical Research Chair (Dalhousie University) and serves on the editorial board of Neurology.
R.J. Fox receives personal consulting fees from Astoria Biologica, Biogen, Bristol Myers Squibb, Cognito, EMD Serono, Galvani, Immunic, INmune Bio, Kiniksa, Novartis, Sanofi, Siemens, TG Therapeutics, and Viracta, has served on advisory committees for AB Science, Biogen, Immunic, Novartis, and Sanofi, and received clinical trial contract and research grant funding from Biogen, Novartis, Sanofi, and Synaptogenix.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
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References
Supplementary Material
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