Background/Purpose: SLE mostly affects women; however, males represent 4-22% of patients. Research shows men tend to seek medical attention & supportive care < women & are underrepresented at self-management/support services for coping with SLE, despite having higher disease severity. Limited research exists regarding the specific medical, psychosocial, & support needs of men with SLE. Our hospital conducted a national survey to identify self-reported needs & concerns for men with SLE, as well as their interest in male specific support forums.

Methods: An 85-item survey with Likert scale & opened-ended questions was disseminated nationally to males with SLE over 18. The survey was advertised via online forums, at major hospitals serving SLE patients in NYC & at local & national SLE groups. The survey assessed 4 core areas: health status & quality of life, health behavior & lifestyle, access to care & interest in male specific programming. Surveys were completed via an online link.

Results: A total of 112 respondents participated in the survey, 61% identified as White, 21% Black/African-American, 15% Hispanic & 31% other. Mean age was 26 & mean year since diagnosis (DX) was 10. 49% of males were employed/self-employed & 46% unemployed/unable to work. 53% had an annual income of ˃ 50K, & 59% had some college or advanced degree. 94% reported having health insurance. Almost half (45%) reported living in an urban/city area, 34% suburban area & 20% rural area. Almost all (92%) were being treated by a Rheumatologist.

When respondents rated their overall health, 65% reported their health as fair/good, while 21% reported poor health. The majority (76%) reported worrying more about their future since DX. Most males (83%) reported that SLE limits their activities of daily living. When asked about the single most important way SLE affected daily life, responses included fatigue & pain, with 48% reporting feeling pain daily. 53% of men reported SLE affects their sexual health: 52% reported less sexual desire & satisfaction, 45% limited motion, & 47% impotence. When asked how often they followed medical advice, 59% said always, however reasons for not following medical advice included: worry about treatment side effects (44%) & that treatment would not help (43%).

Over half (58%) reported feeling depressed for several days/more than half the days in the last 2 weeks. Regarding support & coping with SLE, 52% reported receiving no support. 84% had never taken a class to learn self-management & coping skills. When asked if they would be interested in receiving support to help cope with SLE, 40% were interested/very interested, 44% reported being unsure &15% were not interested. When asked about the type of support platform they would prefer, 77% indicated online, 71% lupus app, 69% social group & 67% support & education group.  When asked how likely they would be to participate in a male only support group, 50% reported likely/very likely, 27% unlikely/very unlikely & 23% unsure.

Conclusion: Despite our small sample, this study provides important information about the physical & emotional health of males with SLE as well as their interest in psychosocial support. A next step would be to conduct focus groups with males with SLE to better understand their specific support needs.

« Back to 2019 ACR/ARP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-national-needs-assessment-of-males-with-sle-assessing-medical-psychosocial-support-coping-needs/