New study finds better mental health linked to adherence in hemophilia
Findings highlight role of psychosocial factors in treatment engagement
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- Better mental health is associated with better adherence to prophylactic treatment in hemophilia.
- Adherence is higher in hemophilia A and among those receiving more frequent infusions and shorter treatment duration.
- Findings highlight the importance of addressing mental health and psychosocial needs in hemophilia care.
People with hemophilia who report better mental health may be more likely to follow their prophylactic (preventive) treatment as prescribed, according to a new study based on a survey of 78 adolescent and adult males in Brazil.
Researchers said this finding “underscores the need for [clinicians treating people with hemophilia] to address not only clinical but also psychosocial aspects of care, given their direct impact on treatment engagement.” Findings from the study also suggest that having hemophilia A was associated with better adherence to prophylactic treatment compared with hemophilia B.
Study examines factors influencing treatment adherence in hemophilia
The study, “Adherence to Clotting Factor Prophylaxis in Adolescent and Adult Males With Haemophilia,” was published in Haemophilia.Â
Hemophilia refers to disorders marked by low levels of proteins needed for blood to clot, specifically clotting factor VIII in hemophilia A and factor IX in hemophilia B. When these clotting proteins are deficient, blood cannot clot properly, leading to symptoms such as easy or prolonged bleeding.
Standard prophylactic treatment for hemophilia often involves factor replacement therapies, in which a functional version of the deficient protein is routinely administered into the bloodstream to help normalize clotting and prevent bleeds.
Replacement therapies can be effective for controlling bleeds, but they require regular infusions, which can be burdensome. Like most medications, replacement therapies work best when they are taken as prescribed. In medical terms, this is known as adherence.
Many factors can influence whether someone with hemophilia follows their prophylactic treatment plan, including disease-related differences, social and economic factors, and personal beliefs. A team led by scientists in Brazil set out to better understand which of these factors are most strongly linked to adherence.
To find out, the researchers surveyed 78 adolescent and adult males with hemophilia at their center. Most participants had hemophilia A, and most had severe disease, defined as clotting factor levels lower than 1% of normal. Participants had been on prophylaxis for varying lengths of time, ranging from about one year to more than a decade.
Researchers assess adherence using standardized questionnaire
All patients completed a standardized adherence assessment, the Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro) questionnaire. Based on this questionnaire, 90% of participants were classified as adherent, while the remaining 10% were not.
Participants also completed additional questionnaires assessing factors such as disease status and mental health. Using these data, the researchers conducted statistical analyses to identify variables significantly associated with adherence, as measured by the VERITAS-Pro.
Results showed that better mental health scores were associated with better adherence, based on VERITAS-Pro scores. In other words, participants who reported better mental health were more likely to be adherent to their treatment.
The analyses also showed that adherence was more common among participants with hemophilia A, and among those who received infusions more than twice weekly compared with those with less frequent infusions. Data also indicated that participants who had been on prophylaxis for longer were less likely to be adherent.
“The main determinants of clotting factor prophylaxis adherence among [men and teens with hemophilia] treated at a Brazilian [center] were having hemophilia A, infusing factor more than twice weekly, having a shorter duration of prophylaxis, and a good mental health,” the researchers concluded.
Other variables, including overall quality-of-life scores and certain sociodemographic factors, were not significantly associated with adherence in the researchers’ statistical models. The scientists noted that, because most participants in this study were adherent, their models had limited ability to detect statistically meaningful differences. As such, further studies are needed to confirm and expand upon these findings, they said.
