Socialization of Adult Men With Congenital Hemophilia A or B

There are two groups (cohorts) in this study. One group is adult men with congenital hemophilia A or B who qualify for the study. The other group is their spouse or significant other (SSO) who are voluntarily identified by the person with congenital bleeding disorder for recruitment into the study.

For the adult men with congenital hemophilia A or B, the study involves a minimum of 2 visits and includes screening, medical history and physical exam review, completing confidential questionnaires and interview.

Eligible men with congenital hemophilia A or B (person with congenital bleeding disorder, PWCBD) are given the option to permit the investigator to contact their spouse or significant other (SSO) for participation in the study. If PWCBD has an SSO, the SSO is not required to participate in the study.

Spouse/significant other(SSO)of men with congenital hemophilia A or B may enter the study only if they have been voluntarily identified by their partner (PWCBD) and their partner has opted to allow investigator to contact them. For the SSO who chooses to participate in the study, the study will involve a minimum of one visit and includes completing confidential questionnaires and interview.

All participation including questionnaires and interview information collected is confidential and protected by health privacy information laws and records are de-identified.

The study is sponsored by a grant from The National Hemophilia Foundation.

Eligibility criteria for person with congenital bleeding disorder(PWCBD, men with congenital hemophilia):

• Known diagnosis of congenital hemophilia A or B with or without inhibitor (defined by a plasma factor VIII or factor IX level below lower limits of normal and medical history consistent with diagnosis).
• Male age 21 years or older
• Willing to indicate if they have a spouse or significant other.
• Able to read, write and participate in interview on site.

Exclusion criteria

for PWCBD:

• Other bleeding disorder besides congenital hemophilia A or B

Eligibility criteria for spouses/significant other (SSO) participants in the study:

• A person in a relationship for a minimum of 9 months with the PWCBD participating in the study.
• PWCBD partner must be participating in the study.
• Willing to participate in questionnaire and interview on site.

Exclusion criteria

for SSO:

• Biologically related to PWCBD participant (that is, not a parent, sibling, child or other biologically-related caregiver).