High Rates of Undiagnosed Depression and Anxiety Found in Adults with Hemophilia, US Survey Says

High Rates of Undiagnosed Depression and Anxiety Found in Adults with Hemophilia, US Survey Says

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.

A team led by researchers at the Munson Medical Center, and supported by Pfizer, conducted a survey to better understand the incidence and impact of anxiety and depression among hemophilia patients.

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.

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Margarida graduated with a BS in Health Sciences from the University of Lisbon and a MSc in Biotechnology from Instituto Superior Técnico (IST-UL). She worked as a molecular biologist research associate at a Cambridge UK-based biotech company that discovers and develops therapeutic, fully human monoclonal antibodies.

2 comments

  1. Robert M Persi says:

    Thank you, I am 64 year old and lived with Hemophilia my whole live. I could live with the hemophilia but the day to day pain and issues with hemophilia is hard to deal with, especially in the 1980 and the AIDS epidemic.

    • Priscilla Oren says:

      I wonder if they surveyed any of us “leftovers” from the Hemophilia Holocaust because our mental well being has been shattered in so many ways and we are a forgotten group since so many are gone but those of us who are left are out there with no support…even after our loved ones are gone…the lasting anger, guilt, remorse and bitterness stay. I have a special group of moms who I communicate with on a regular basis and we all feel these emotions. Wish we could collect together and have our own retreat👍🤷‍♀️

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