The HERO study

The HERO study was an international, multidisciplinary research project conducted to help build a solid understanding of life with hemophilia as experienced by people with hemophilia, parents of children with hemophilia, and their health care providers.

Where was HERO conducted?

The HERO study took place in 10 countries, and 1236 people completed the survey. In the United States, 189 adults with hemophilia and 190 parents of children with hemophilia participated.

Psychosocial issues

Psychosocial issues are whatever affects your emotions or how you interact with others, such as your attitudes about hemophilia, dreams and aspirations, or social interactions. These issues are often influenced by your age, cultural/ethnic background, personal values, socioeconomic position, or your access to medical care and level of treatment.

Benjamin lives with hemophilia A


Benjamin lives with hemophilia A.


 



 

Snapshot of the key findings

From their dreams to their pain to the impact of support and family love, people with hemophilia had a lot to reveal about their lives.

Family bonds

Many parents who also had unaffected children said that having a child with hemophilia actually had some positive impact.

Reasons given for positive impact were:

Snapshot of HERO study data regarding children with hemophilia


Closer family ties

Snapshot of HERO study data regarding children with hemophilia


Increased maturity in other siblings

Snapshot of HERO study data regarding children with hemophilia


Increased responsibility in other siblings

 






Satisfaction with partner/family support

Adults with hemophilia

Snapshot of HERO study data showing satisfaction with partner/family support


"Very/quite satisfied" with partner support

Parents of children with hemophilia

Snapshot of HERO study data showing satisfaction with partner/family support


"Very/quite satisfied" with partner support

Snapshot of HERO study data showing satisfaction with partner/family support


"Very/quite satisfied" with family support

Sexual relationships

HERO gathered the first-ever data on sexual intimacy in adults with hemophilia.


Snapshot of HERO study data showing information on sexual intimacy in adults with hemophilia

were "extremely/moderately satisfied" with sexual intimacy with their long-term partners


Adults reported that hemophilia affected their sex life in the following ways:

60%

reported limitations in movement

40%

reported constant pain

32%

reported previously having a bleed as a result of sex

Impact of pain

Pain continues to have a grip on adults with hemophilia.

Snapshot of HERO study data revealing the impact of pain on adults with hemophilia


of adults with hemophilia
reported at least some pain

Snapshot of HERO study data revealing the impact of pain on adults with hemophilia


had constant pain that interfered with their daily lives in the past 4 weeks

Sports and activities

Children with hemophilia aspire to engage in typical (yet high-risk) activities, but are choosing otherwise.

Children with hemophilia aspire to play:

51%

football

21%

ice hockey

19%

martial arts


However, swimming is the most common activity

Snapshot of HERO study data outlining research on sports and activities for children with hemophilia


 



 

Learn more about the HERO study

People living with hemophilia can be affected by a variety of psychosocial issues, but the HERO research shows that, overall,
people are living successful, satisfying, and meaningful lives.

Find out more by attending or scheduling the Community University workshop, HERO: Strength in Numbers.