For patients living with chronic illnesses such as hemophilia, it is vital that physicians do not lose sight of the importance of asking questions related to their quality of life.
We as physicians can at times be laser-focused on clinical signs and symptoms in the hopes of getting the right diagnosis and prescribing the right treatment. This is perhaps understandable, given the huge number of patients that physicians typically need to see in a day.
In the UK, clinic appointments tend to be 10 minutes long, and a doctor’s computer screen may have a live clock showing how long each patient has been in the waiting area. However, for patients living with chronic illnesses, there is perhaps nothing more important than being given the space and time to discuss their perceived quality of life.
One of the aspects of quality of life that is often overlooked is sexual health. In some areas of the world, asking about sexual health without being prompted to do so by the patient may seem out of place and even presumptive. Certainly, during my time working as a doctor in Asia, I have never heard sexual issues being intentionally brought up except in the obstetrics and gynecology department.
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However, sexual health looms large in the minds of many patients of reproductive age, and the stigma associated with talking about these issues, especially in front of an audience of a group of physicians and medical students, can be daunting. Also, patients may not realize the sexual dysfunction they experience is linked to their disease.
Sexual Health Is Health
As published in Patient Related Outcome Measures, Blamey and colleagues conducted a study to examine how patients with hemophilia feel about their sexual health.
First, a word on how hemophilia predisposes a person to ill sexual health. Joint disease, which is typically brought about by excessive bleeding, can make the physical act of copulation difficult. In females, excessive menstrual bleeding can dampen sexual desire. General chronic pain from inadequately treated hemophilia can cause patients to shy away from all manners of physical activity, including sex.
“Self-esteem can also negatively affect an individual’s sexual [quality of life]; people with hemophilia may be at increased risk for negative body image because of their physical limitations,” Blamey and colleagues wrote.
Blamey et al thus sent a survey to participants with hemophilia in 10 countries worldwide, including the United States. When asked about how hemophilia has affected their sex lives, the most common response was bleeding as a result of sex. Another common response was having a lack of sexual desire. It appears, therefore, that the combined toll of a chronic disease such as hemophilia can make individuals less receptive to the idea of sex.
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In a separate study published in Haemophilia, Blamey and colleagues proposed an interesting model to help us understand how hemophilia affects sexual health. The proposed model is a decision-making format that flows from the head to the heart to the body. In other words, when asking patients questions about sexual health, it is important to start by discussing patients’ thoughts and values, followed by their feelings and emotions, followed by physical aspects of sexuality.
In other words, patients should be encouraged to speak freely about any aspects of their sexual health. This means creating room for open-ended discussions. Studies have demonstrated that patients are indeed willing to speak up about these issues when given the opportunity to do so. It is, however, important that healthcare professionals are also comfortable (and competent in) discussing these issues with their patients.
A Safe Space
It remains largely unexplored in the scientific literature how comfortable patients with hemophilia feel about discussing issues related to sexual health with members of their care team, such as physicians, social workers, nurses, and physical therapists.
There are 2 main ways to create a safe space for patients to discuss such intimate issues with healthcare professionals: first, by making it a routine part of clinical evaluation; second, by ensuring that healthcare professionals are adequately trained to converse on this topic in a professional and thoughtful manner.
Another way to incorporate sexual health into discussions on quality of life is simply to add it as an item in quality of life questionnaires. Quality of life questionnaires are an attempt to objectify what is a largely subjective experience. In addition to talking about physical mobility, mental health, and social integration, physicians should also incorporate sexual health as a topic that deserves to be explored.
On a broader level, sexual health should become a central topic of scientific study of the effects of hemophilia. The scientific community should devote more time and resources in order to investigate the mechanisms underlying sexual dysfunction in hemophilia and aim to create strategies to treat it. This means improving both the psychological and physical aspects of sexual health.
“Sexual difficulty is more prevalent in people living with hemophilia and associated with markers of disease severity. Sexual health issues should be incorporated in comprehensive hemophilia care, future research, and hemophilia related health policy,” Germini and colleagues recommended in Haemophilia.
Blamey G, Van Tassel B, Sagermann E, Stain AM, Waterhouse L, Iorio A. Sexual issues in people with haemophilia: awareness and strategies for overcoming communication barriers. Haemophilia. 2022;28(1):36-41. doi:10.1111/hae.14447
Germini F, Chai-Adisaksopha C, Pete D, et al. Evaluation of the sexual health in people living with hemophilia. Haemophilia. 2021;27(6):993-1001. doi:10.1111/hae.14410
Blamey G, Buranahirun C, Buzzi A, et al. Hemophilia and sexual health: results from the HERO and B-HERO-S studies. Patient Relat Outcome Meas. 2019;10:243-255. doi:10.2147/PROM.S211339