Patient-Reported Data Informs New Study on Sexual Health and Hemophilia

An understanding of sexual health in people living with hemophilia (PWH), including difficulties with sexual activity and intimacy, has been historically lacking. To help fill this knowledge gap, a new study was conducted to establish the prevalence of sexual difficulty in this population, compare it with that of people with no bleeding disorder (PWNoBD), and to uncover contributing factors to those difficulties.

The resulting paper, “Evaluation of the Sexual Health in People living with Hemophilia,” was published in the journal Haemophilia. Investigators performed a retrospective analysis of data generated from the Patient Reported Outcomes Burdens and Experiences (PROBE) initiative, an international data collection network and a questionnaire tool created to learn more about the impact of hemophilia specifically on patient reported outcomes.

The PROBE questionnaire includes questions related to difficulties with sexual intimacy and is designed to be anonymous, can be administered by paper, through the myPROBE app, or via the PROBE website. It takes approximately 7–15 minutes to complete. Participants were recruited by National Member Organizations of the World Federation of Hemophilia and matched control groups in 48 countries. Those recruited included individuals with hemophilia A or B and PWNoBD who were 18 years old or older.

Because the questionnaire gleans data on demographics, co-morbid diseases, general health problems, and hemophilia-related health problems, it allowed investigators the opportunity to draw several significant associations with sexual difficulties.

There were ultimately 2007 PWH and 1972 PWNoBD included in the analysis. Mean age was 41 years in PWH and 42 years in PWNoBD. Sexual difficulty was reported in 302 (15.1%) PWH and 79 (4.0%) PWNoBD, with the odds of sexual difficulty significantly higher in PWH.

While investigators found that general health problems and various conditions affected the sexual health of both PWH and PWNoBD, the association between self-reported co-morbid diseases and sexual health was greater in the former group.

Hepatitis B, hepatitis C, hypertension, arthritis, and gingivitis were each associated with higher negative impact on the sexual health of PWH.

Further, certain type bleeds experienced by PWH had greater adverse effects on sexual activity, including those in the psoas, a pair of large muscles which run from the lumbar spine through the groin area and attaching to the femur. Collectively these muscles are known as the iliopsoas and help to flex the hip joint.

“We observed that PWH who reported recent psoas bleeding had more frequent sexual difficulty than those who did not. Iliopsoas muscle bleeding can limit sexual intercourse because this muscle functions in the thrusting movement during sexual intercourse,” explained the authors.

Investigators also observed that were a series of independent contributors to sexual difficulty in PWH including older age, experiencing acute pain or chronic pain in the past 12 months, having bleeds within the past two weeks, reduced ranged of motion of any joints, having more than three spontaneous joint bleeds in the previous six months, and having life- or limb-threatening bleeds in the past 12 months. Any combination of these factors can lead to increased pain, hindered mobility, with subsequent limitations to sexual positioning and intercourse.

In light of the knowledge generated by this study, investigators see an opportunity to ensure that sexual health becomes a key part of the conversations that will, going forward, inform hemophilia care and quality of life for PWH.

“Sexual difficulty is more prevalent in PWH. Health problems and comorbidities resulted in more frequent sexual health difficulty in PWH than PWNoBD. Healthcare providers, researchers, and policy makers should incorporate sexual health discussion in comprehensive hemophilia care, future research, and health policy,” concluded the authors.

Germini F, Chai-Adisaksopha C, Pete D, et al. Evaluation of the Sexual Health in People Living with Hemophilia. Haemophilia. 2021; 1-9 (

Source: National Hemophilia Foundation

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