Background/Purpose:   While studies report that SLE affects primarily women, males with SLE represent 4-22% of SLE patients. Support & education has improved self-management & coping strategies, including sexual health (SH) issues. Beliefs about what it means to be a male having a “women’s disease” can undermine good preventative & SH care for men with SLE. Further, despite research demonstrating higher mortality for males, males with SLE tend to seek medical attention & supportive care less often than females. A hospital-based support & education program, ongoing since 1994, conducted a pilot survey to identify self-reported needs & concerns for men with SLE. 

Methods:   Ten males with SLE were recruited to participate in a pilot, semi-structured 30 min phone interview; consisting of 6 scripted open-ended questions, focused on: SLE knowledge, impact, communication with doctor & partners, SH & interest in male specific programing.

Results:   Three males were African-American, 3 Latino & 1 Asian; mean age 26, mean years since diagnosis 9. All males demonstrated good baseline understanding of SLE & describing it as “unpredictable” & a “women’s disease.” The areas of their lives most affected by SLE, included: physical limitations, personal relationships & work/school. Other themes related to masculine/cultural stereotypes, suggesting that seeking care or asking for help is “weak.” “I am told to man up, seeing a therapist is taboo in my family.” All males agreed these views contributed to increased physical activity despite known limitations, to combat feelings of weakness.   All males reported attending primarily “female support groups”& expressed inability to relate to women’s experiences with SLE due to different life concerns, “there is no sense of connection.” When asked about SH concerns, fears about infertility & feeling uncomfortable talking to their doctors or partners about these issues were shared. All men were concerned about medication side effects contributing to SH & other health factors. Additionally, all males reported never talking directly with their rheumatologists regarding SH & SLE. When asked why, the majority indicated they preferred to be asked directly by providers.   All expressed a desire for more tailored SH education as it relates to their SLE & a male specific support group addressing the following areas: communication issues with doctors & partners, strategies for sexual decision making & general SH topics. When asked if they would attend said programming, all replied affirmatively.

Conclusion:   Despite our small sample size, our pilot shows an unmet need for this population, which potentially impacts on psychosocial, SH, disease self-management & outcomes. Despite some (primarily Web based) support forums for males with SLE, no peer reviewed literature was found reporting on the efficacy of these interventions. The next step is to develop a more robust needs assessment to address barriers & best interventions in partnership with the rheumatology community.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/pilot-evaluation-points-to-male-specific-educational-programming-for-males-with-sle/