Many hemophilia patients experience undiagnosed symptoms of depression and anxiety that can impact their ability to cope with the disease and to adhere to treatment, a U.S. survey says.
These findings shed light on psychological factors that affect the course of the disease, but with dedicated management and follow-up, depression and anxiety may be prevented, the researchers said.
Their study, “Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey,” was published in the journal Patient Preference and Adherence.
Many chronic diseases are associated with painful symptoms, which in turn may be linked to psychological manifestations such as depression. The relationship between pain, depression, and anxiety is complex, and often results in self-perpetuating symptoms, the researchers said.
“Suboptimal coping strategies often affect relationships and reduce motivation to participate in activities that increase self-worth,” which may contribute to worsening depression or anxiety, “leading to a harmful cycle of depression and behavioral inertia,” they wrote.
Little information is available about the prevalence or predictors of depression and anxiety among adults with hemophilia. Evidence suggests that depression diagnosis and care may contribute to better overall health outcomes and treatment adherence.
The study recruited 200 participants, of whom 80.5% had hemophilia type A and 19.5% had hemophilia type B, between 2013 and 2014 at national or state conferences for people with hemophilia in the United States. Among the participants, 68% had severe disease.
The team evaluated the levels of anxiety and depression in this population using two validated questionnaires: the Patient Health Questionnaire 9-item depression module (PHQ-9) and the Generalized Anxiety Disorder 7-item scale (GAD-7).
The survey revealed that 186 (93%) participants experienced symptoms consistent with depression, and 184 (92%) had anxiety. Among these patients, 52 (28%) reported moderate-to-severe depression, while 23 (13%) had moderate-to severe anxiety.
More than half of these patients reported no history of diagnosed depression, the researchers noted. Only those who had moderate-to-severe anxiety on the GAD-7 test were likely to have been diagnosed.
“These results suggest that patients with hemophilia may have undiagnosed depression or anxiety and should be screened for these disorders so that treatment, if necessary, may be initiated,” the researchers wrote.
Many of the participants identified as having moderate-to-severe psychological symptoms were taking preventive (prophylactic) therapy for their hemophilia. Still, those who used clotting treatment when needed (on-demand regimen) had significantly higher mean scores in the PHQ-9 or GAD-7 tests — indicating worse depression or anxiety — compared with those who reported using clotting treatment before physical activity or as a prophylactic.
An evaluation of pain symptoms revealed that patients who had higher PHQ-9 or GAD-7 scores were more likely to report having uncontrolled pain, regardless of their clotting treatment regimen.
The data showed a correlation between PHQ-9 or GAD-7 scores, suggesting that as depression severity increased, anxiety severity also increased. Anxiety and depression levels were also found to be associated with chronic pain symptoms and adherence to treatment.
“Treatment of depression or anxiety [by multidisciplinary teams] may improve adherence to clotting factor therapy and may improve the level of pain control in patients with hemophilia,” the researchers said.
Additional studies are still warranted to explore further the incidence and impact of depression and anxiety in people with bleeding disorders — “with a focus on how these issues affect adherence to medications, treatment plans, and attendance” at treatment centers, the researchers added.