HEMOCOG: Neurocognitive Functions, Health Literacy, and Transition Readiness in Pediatric Hemophiliacs

Hemophilia is an inherited deficiency of factors 8 and 9, which leads to bleeding if not appropriately treated. Symptoms range widely. They can include mucosal bleeding, soft tissue bleeding, joint bleeding, or rarely, intracranial bleeding.

Scientists have measured neurocognitive functioning in hemophilia in the setting of intracranial bleeding and HIV. But research has been limited since the prophylactic use of factor product became standard of care. Updated information on anxiety and neurocognitive skills such as attention and executive functioning will shed light on attention deficit/hyperactivity disorder (ADHD) in these patients. Bleeding in hemophilia patients also can affect school attendance, grades, and educational experiences.

Little is known about health literacy or its link to neurocognitive functioning in hemophilia patients. Health literacy can influence disease management, medication adherence, and transition readiness to adult care.

Primary Objectives

This study will describe attention and executive functioning skills, health literacy, and transition readiness in patients with hemophilia.

Eligibility Criteria

Inclusion criteria include:

• St. Jude hemophilia patients 
• 6–18 years old
• Speak English

Exclusion criteria include:

• Deaf or blind
• Hemophilia patients who have had a neurocognitive assessment in the last 6 months
• History of curative therapy for hemophilia (such as a liver transplant or gene therapy)
• Unable to speak fluent English

Study Site

St. Jude Children’s Research Hospital, Memphis, Tennessee

About this study

We want to study how children and adolescents with hemophilia think and feel.

We will look at:

• How hemophilia affects their attention span
• How often they have anxiety
• How well they understand written information
• How well adolescents move to adult care
• How caregivers view their children’s school experiences

Patients in this study will:

• Take tests to study their attention and understanding
• Complete an activity that will show how well they understand health information
• Answer questions about moving to adult care (for patients age 12 and up)

The caregiver will:

• Answer questions about the patient’s background  
• Complete an activity about health information
• Take a survey about the patient’s school experiences

Purpose of this clinical trial

This study will help us understand how hemophilia affects how patients think, feel, and experience school. The study will also tell us how well patients and their families understand health information. This research will help us improve our care for hemophilia patients. It will also help us learn how to help make the move to adult care easier.

Eligibility overview

To take part in this study, you must be:

• A St. Jude hemophilia patient
• 6–18 years old
• An English speaker