Assessment of Health Literacy & Numeracy in Adolescences with Hemophilia A & B may indicate the need for formal testing

Pilot study findings could impact how HTCs should educate patients on disease interventions

THSNA 2018 (San Diego, CA, March 7-10): There are multiple potential barriers to adherence including intravenous access, frequent infusions, and appreciation of the benefit. It is important to assess Health literacy (HL) and numeracy (HN) in adolescent hemophilia patients, as it may influence how health-related information should be presented to them and it may also help assess their readiness for transition to adult care.

Health literacy (HL) and numeracy (HN) are potentially underestimated barriers to adherence. Health Literacy is the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions, while Health Numeracy is the ability to interpret numeric and graphic information in healthcare context.

Bhatt and colleagues performed a pilot study to assess cognitive function, HL and HN among adolescent patients with Hemophilia A and B (ages 12-21) in relation to the number of joint bleeds, understanding of their factor product, and their adherence to prescribed medication regimens over previous 6-12 months.  The goal of the study was to improve knowledge with the use of visual aids and personal education to simplify difficult health and numeracy concepts in hemophilia management including factor product pharmacokinetics.

Each subject completed 2 study visits across 6-12 month time period. Initially, patients were assessed around hemophilia management, cognitive testing, baseline HL and HN, and received educational session regarding pharmacokinetic (“PK”) terminology and how it impacts treatment regimens.  The second assessment also included questions about their adherence to prescribed dosing, ER visits, and joint bleeding.

Thirty-four adolescents enrolled with diverse set of demographic and socioeconomic characteristics. The majority knew their factor product name, however only 50% (17/34) knew their estimated infusion dose. Cognition was normal in 94% (32/34). An estimate of literacy revealed that 31 %( 11/34) were reading below a 7th grade level with 10% (4/34) reading at or below 3rd grade level; nearly 1 in 3 (38%) had low numeracy scores in relation to probability, half-life, peak and trough.

This study revealed valuable information and areas for specific patient education including factor dosing. The low reading level in 31% and low numeracy understanding in 38% of subjects may indicate the need for formal testing and impact how we should educate adolescent patients on disease interventions and the importance of adherence to prescribed treatments.