Although most patients report that discussing their sexual health with their doctors is helpful, hemophilia significantly affects the quality of their sex lives, according to the results of two studies.
The research, “Hemophilia and sexual health: results from the HERO and B-HERO-S studies,” was published in the journal Patient Related Outcome Measures.
The HERO — mostly in hemophilia A — and the B-HERO-S (NCT02568202; in hemophilia B) studies assessed quality of life, relationships, and other aspects intended to identify challenges to these patients. Both these studies, funded by Novo Nordisk, included questions from the Male Sexual Health Questionnaire (MSHQ), which measures sexual function and satisfaction.
Factors such as joint bleeds, chronic pain, bleeding events caused by sexual activity, and lower self-esteem all may contribute to poorer sexual health in these patients. However, information on sexual relationships and satisfaction in hemophilia patients is still lacking.
An international team assessed these shortcomings by analyzing responses to the MSHQ survey in HERO — in Algeria, Argentina, Canada, China, France, Germany, Italy, Spain, U.S. and U.K. — and the U.S.-based B-HERO-S. A total of 675 men (median age 36 years) took part in HERO, while 299 adults (median age 29 years, 213 men) participated in B-HERO-S.
Most patients (63%) in B-HERO-S had moderate hemophilia B. Disease severity was not assessed in HERO, but the inclusion criteria were characteristic of moderate-to-severe hemophilia.
The evaluations of sexual health were conducted in 85% of the global HERO participants (81% of those in the U.S. and 43% of the B-HERO-S participants) who qualified and chose to respond to the MSHQ.
The results revealed that 41% of all HERO, 30% of HERO U.S. only, and 17% of B-HERO-S respondents were “extremely satisfied” with their overall sexual relationship. Meanwhile, 37% of all HERO, 38% of HERO U.S. only, and 37% of B-HERO-S participants were “moderately satisfied”
As for satisfaction with the number of times they have had sex over the previous month, 27% of all HERO, 21% of HERO U.S. only, and 11% of B-HERO-S respondents were “extremely satisfied.” The data also showed that 43% of all HERO, 33% of HERO U.S. only, and 16% of B-HERO-S participants were “extremely satisfied” with the way they or their partners showed affection during sex, with similar percentages found in patients “extremely satisfied” with the way they communicate about sex.
Higher percentages — 57% of all HERO, 44% of HERO U.S. only, and 21% of B-HERO-S respondents (24% men, 15% women) — were seen in patients “extremely satisfied” with all aspects of their relationship aside from sex.
Also, 53% of all HERO, 68% of HERO U.S. only, and 74% of B-HERO-S participants said that hemophilia affected the quality of their sex life, mostly due to movement limitations and prior bleeding episodes while having sex. Of note, HERO included participants from both developed and emerging countries, who are less likely to have access to effective HIV and hepatitis C virus therapies and, as a result, may experience greater limitations in sex life.
Sex differences were found in B-HERO-S participants, as reflected in the higher proportion of women (47%) than men (11%) who reported fear of having a bleed due to sex.
More B-HERO-S respondents (26%) had sexual intercourse seven to 10 times in the past month compared to participants in HERO (11%) and HERO U.S. (13%).
A higher proportion of patients taking part in B-HERO-S discussed their sex life with their medical team in comparison to those in HERO (56% vs. 28%), most of whom found such discussions “helpful” or “very helpful.” In contrast, among patients who did not have these discussions, 32% of all HERO, 26% of HERO U.S. only, and 23% of B-HERO-S respondents said it would not be helpful at all to talk about their sex life with their doctor.
HERO U.S. respondents were more likely than global HERO participants to discuss their sex life with their doctor. According to the scientists, a greater focus on general health — rather than on sexual health — and cultural differences may explain this difference.
“The results of these studies demonstrate that the impact of hemophilia extends to intimacy and suggest the need for large-scale studies in additional countries to explore further the factors associated with sexual health issues,” the scientists wrote.