Hemophilia and sexual health: results from the HERO and B-HERO-S studies

Abstract

Background

Sexual health plays a primary role in quality of life (QoL) for many people, including those with hemophilia; however, there is little information available about sexual relationships and satisfaction in patients with hemophilia.

Methods

To address this issue, the Hemophilia Experiences, Results and Opportunities (HERO) and the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) studies included questions from the Male Sexual Health Questionnaire (MSHQ).

Results

Although these data were not statistically analyzed for comparisons between the 3 populations (HERO, HERO US only, and B-HERO-S), in general, participants in the HERO survey appeared to be more satisfied with their sexual relationship than participants in the B-HERO-S survey. In addition, many patients, especially those outside the United States, reported that they had not discussed sexual health with their doctor or other members of the hemophilia treatment center team. While the topic of sexual health has been infrequently explored in men with hemophilia, this is the first time it has been investigated in women with hemophilia.

Conclusion

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 in people with hemophilia.

Keywords:

• Male Sexual Health Questionnaire
• quality of life
• sexual relationships

Supplementary material

Table S1 Response breakdown between male and female respondents of the B-HERO-S study

Acknowledgments

Writing assistance was provided by Amy Ross, PhD, of ETHOS Health Communications in Yardley, Pennsylvania, and was supported financially by Novo Nordisk Inc., Plainsboro, New Jersey, in compliance with international Good Publication Practice guidelines.

Abbreviations

B-HERO-S, Bridging Hemophilia B Experiences, Results and Opportunities into Solutions; HCP, health care provider; HCV, hepatitis C virus; HERO, Hemophilia Experiences, Results and Opportunities; HTC, hemophilia treatment center; IRB, institutional review board; MSHQ, Male Sexual Health Questionnaire; QoL, quality of life.

Disclosure

CB has received honoraria from Novo Nordisk Inc., although all have been unrelated to the subject matter discussed in this manuscript. DLC and HS are employees of Novo Nordisk Inc. AB reports grants from Bayer, CSL Behring, Kedrion, Novo Nordisk, Pfizer, Roche, Shire and Sobi, outside the submitted work. SC reports honoraria from Pfizer and from Novo Nordisk Inc., outside the submitted work. The authors report no other conflicts of interest in this work.