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The eTHINK Study: Cognitive and Behavioral Outcomes in Children with Hemophilia
Christine Mrakotsky1, Karin S Walsh2, Cathy Buranahirun Burns3
1Boston Children's Hospital/Harvard Medical School, Boston, MA.
Insights
Children and young adults with hemophilia generally show normal cognitive and adaptive development. However, some individuals experience attention deficits and executive function challenges, necessitating targeted screening and interventions.
Area of Science:
- Pediatric Hematology
- Neurodevelopmental Pediatrics
- Clinical Psychology
Background:
- Contemporary care for hemophilia has evolved significantly, prompting an assessment of its impact on neurodevelopment.
- The Evolving Treatment of Hemophilia's Impact on Neurodevelopment, Intelligence, and Other Cognitive Functions (eTHINK) study (NCT03660774) was initiated to investigate these effects.
- Understanding the long-term cognitive and adaptive outcomes in individuals with hemophilia is crucial for comprehensive care.
Purpose of the Study:
- To evaluate cognitive, behavioral, and adaptive functions in children and young adults with hemophilia.
- To establish normative data for neurodevelopmental monitoring in this population.
- To identify specific age or patient groups that may require targeted interventions.
Main Methods:
- A prospective, cross-sectional, observational study involving 551 males aged 1-21 years with hemophilia A or B.
- Participants underwent neurological examinations and standardized neuropsychological assessments.
- Evaluations covered early development, cognition, emotional/behavioral adjustment, and adaptive skills.
Main Results:
- Cognitive test performance was largely comparable to US population norms.
- Specific age groups (4-5 and 10-21 years) showed deficits in attention and processing speed.
- Adolescents and young adults, particularly those with attention-deficit/hyperactivity disorder (ADHD), reported more daily life challenges with adaptive and executive functions. The incidence of ADHD in adolescents was 21%.
Conclusions:
- Males with hemophilia generally exhibit age-appropriate intellectual, behavioral, and adaptive development.
- Poorer attention and concerns regarding executive and adaptive development were noted in specific subgroups.
- The study provides valuable normative data and underscores the importance of screening for and intervening in cognitive and adaptive skill challenges in individuals with hemophilia.
Objective:
To assess cognitive, behavioral, and adaptive functions in children and young adults with hemophilia treated according to contemporary standards of care.
Study Design:
Evolving Treatment of Hemophilia's Impact on Neurodevelopment, Intelligence, and Other Cognitive Functions (eTHINK) is a US-based, prospective, cross-sectional, observational study (September 2018 through October 2019). Males (aged 1-21 years) with hemophilia A or B of any severity, with or without inhibitors, were eligible. Participants underwent neurologic examinations and age-appropriate neuropsychological assessments, including standardized tests/ratings scales of early development, cognition, emotional/behavioral adjustment, and adaptive skills.
Results:
Five hundred and fifty-one males with hemophilia A (n = 433) or B (n = 101) were enrolled. Performance on cognitive tests was largely comparable with that of age-matched US population norms, although participants in certain age groups (4-5 and 10-21 years) performed worse on measures of attention and processing speed. Furthermore, adolescents and young adults and those with comorbid attention-deficit/hyperactivity disorder (ADHD; n = 64) reported more adaptive and executive function problems in daily life. Incidence of ADHD in adolescents (21%) was higher than expected in the general population.
Conclusions:
In general, males with hemophilia demonstrated age-appropriate intellectual, behavioral, and adaptive development. However, specific patient/age groups showed poorer attention performance and concerns for executive and adaptive development. This study established a normative data set for monitoring neurodevelopment in individuals with hemophilia and highlight the importance of screening and intervention for challenges with cognitive and adaptive skills in this population.
Clinical Trial Registration:
Evolving Treatment of Hemophilia's Impact on Neurodevelopment, Intelligence, and Other Cognitive Functions (eTHINK); NCT03660774; https://clinicaltrials.gov/ct2/show/NCT03660774.
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