Over 10% of men with hemophilia report restricted sexual functioning
Such issues negatively impact quality of life, but are not discussed: Study
More than 1 in 10 men with hemophilia reported being restricted in their sexual functioning, which, in turn, had a negative impact on their quality of life, per data from a new survey-based study conducted in the Netherlands.
The study also found that this specific topic is not commonly addressed by healthcare professionals during clinic visits nor brought up by patients themselves during such appointments, potentially “due to feelings of discomfort or the worry that no interventions can be offered for problems in sexual functioning,” the researchers noted.
According to the team, these findings highlight how important it is “to develop approaches to measure all components of sexual functioning and to make this topic open for discussion during outpatient visits.”
A key issue found in the study was an association between the patients’ need to adjust body position during sexual activity and restricted sexual function, indicating that movement limitations can impact sexual functioning in men with hemophilia.
“This emphasizes the importance for [healthcare professionals] to be aware of, discuss, inform, and consider care (e.g., referring to psychologist, sexologist, or physiotherapist) regarding restrictions in sexual functioning in [men with hemophilia] with impaired movement,” the researchers wrote.
The study’s findings were reported in a letter to the editor, titled “Sexual functioning in men with haemophilia: Data from the haemophilia in the Netherlands-6 study,” which was published in the journal Haemophilia.
Sexual functioning restrictions driven by issues like joint problems, pain
Studies previously have shown that restrictions in sexual function, in general, are associated with higher rates of depression, anxiety, and poorer physical function.
Hemophilia symptoms and associated complications — including pain, limited joint movement, and the risk of bleeds — may limit patients’ ability and desire to have sex, putting them at a higher risk of experiencing sexual problems.
Yet, “to date, limited research has been conducted on the impact of restricted sexual functioning in [men with hemophilia] and its potential association with [health-related quality of life],” the researchers wrote.
That knowledge gap led this team of scientists to explore the association between sexual functioning and different domains of quality of life, and to also try to gain insights into discussions between men with hemophilia and healthcare professionals. To that end, the team analyzed data from the Hemophilia in the Netherlands-6 (HiN6) survey, which was conducted in 2018-2019.
In total, 1,746 Dutch adult males with mild, moderate, or severe hemophilia A or B, were invited to participate in the HiN6 study. Of those invited, 720 fully or partially completed the survey questions about sexual functioning.
Patients in this group had a mean age of 49.3 (ranging from 18 to 88 years) and nearly half (49%) had mild hemophilia.
A total of 43 patients reported not being sexually active and were excluded from the study. Among the 677 sexually active patients, 78 (12%) reported being restricted in sexual functioning. Restrictions were driven by joint problems, pain, the possibility of muscle and joint bleeds, blood in sperm, known as hematospermia, medication side effects, and fatigue.
Statistical analyses also indicated that the need for adjusting body position during sex, along with hematospermia, and increasing age were all factors significantly associated with restrictions in sexual function.
60% of patients prefer not to discuss such issues with clinicians
Limitations in sexual function also were associated with a negative impact on several domains of health-related quality of life, including poorer physical function, less satisfaction with participation in social roles, sleep disturbance, and pain.
Most patients (81%) did not discuss sexual functioning with healthcare professionals during their regular outpatient visits. Importantly, more than half of all patients (60%) said they preferred not to have such discussions. Nearly one-third, or 31%, said they were uncertain if they wished to have such discussions, while 7% reported that they preferred to discuss the topic with clinicians.
A discussion was more likely to happen when patients experienced hematospermia. Younger patients and those who adjusted their body position during sex were also more likely to discuss sexual functioning with doctors. In general, men who faced restrictions more frequently preferred to engage in discussions about sexual functioning than those who had no restrictions.
The current study shows that over 10% of [men with hemophilia are] restricted in sexual functioning due to [hemophilia] and that this is negatively associated with several [health-related quality of life] domains.
The researchers suggested that, at the least, clinicians should make sure patients know where they can find out more about these issues.
“Offering information is important to ensure [men with hemophilia] have the means to access relevant information independently when they prefer not to discuss sexual functioning with the [healthcare professional,” the team wrote.
According to the investigators, this is one of the first studies to delve into the impact of sexual function in men with hemophilia.
“The current study shows that over 10% of [men with hemophilia are] restricted in sexual functioning due to [hemophilia] and that this is negatively associated with several [health-related quality of life] domains,” the researchers wrote.
“Adequate training for [healthcare professionals] should be considered to enable them to initiate the discussions and to demonstrate what care they can offer,” they wrote.
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