Study shows support key for acquired hemophilia patients, families
Clear information, continuing follow-up important for sense of control
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Acquired hemophilia can leave patients and their families feeling fearful and out of control. Clear information, ongoing medical follow-up, and good support systems are important for helping them regain confidence and a sense of normalcy, according to a study from Sweden based on interviews with patients and their family members.
“A more comprehensive and coordinated approach to care is … needed to ensure that both patients and their relatives receive adequate support,” the researchers wrote.
The study, “Living With Acquired Haemophilia: Patients’ and Relatives’ Experiences – A Single-Centre Study,” was published in Clinical and Applied Thrombosis/Hemostasis.
Acquired hemophilia can develop suddenly, even in people without a history of bleeding problems. This rare form of hemophilia usually arises when the immune system mistakenly attacks factor VIII, a blood-clotting protein that helps stop bleeding. As a result, excessive bleeding can occur unexpectedly and may be difficult to control.
Treatment usually involves a combination of medications to control active bleeding and immunosuppressants to eliminate disease-causing antibodies. But even with appropriate treatment, acquired hemophilia can be unpredictable, with a wide range of negative effects on a person’s physical and psychological health.
Loss of control is source of stress
The researchers spoke with 12 adults with acquired hemophilia who were treated at a center in Sweden, along with their relatives, to better understand how living with acquired hemophilia affects everyday life. Common themes emerged, all involving the sense of losing control to the disease and feeling a need to regain a normal life.
Participants described constant uncertainty, because bleeding could occur suddenly and for no obvious reason. Even when on treatment, people worried about whether another bleed might occur. This made them constantly watch for bruises, pain, weakness, or other changes.
Some patients had experienced severe bleeding that made them fear dying. Others worried that treatment might stop working or that a small injury could cause another bleed. Because they no longer fully trusted their bodies, some avoided activities, social events, or situations where they thought bleeding might happen.
Many patients and relatives said their lost sense of control was in part because they had difficulty understanding acquired hemophilia. They were unfamiliar with the disease and sometimes received complex medical information when they were frightened or unwell.
“No, I didn’t get very good information there,” one patient said. “I think I would have needed more information to understand how things worked.”
Relatives were sometimes even more uncertain than patients, because they depended on what the patient could remember and explain. “He couldn’t really explain what kind of infusion he was getting, so I sometimes thought about calling and asking,” one relative said.
Survey participants described how hemophilia disrupted everyday life and how they had to adapt to manage it. Factors such as fatigue, weakness, fear, and hemophilia treatment side effects affected routines, work, family responsibilities, and social activities. Some patients had to stop working or give up activities, and others said the disease changed how they saw themselves.
Some younger patients described emotional support from relatives as “present but not always sufficient,” the researchers said. For these patients, speaking with a psychotherapist provided reassurance.
Relatives also found professional support helpful when emotional strain from prioritizing patients’ needs over their own became too much.
“I needed to talk,” one relative said. “I had to release all that tension, it was like having a muscle cramp that needed to loosen.”
Coping strategies varied among patients. Some tried to focus on what they could still do rather than what acquired hemophilia had taken away. Others gradually returned to activities, testing their limits in small steps. Over time, successful experiences and reassuring medical results helped some patients rebuild trust in their bodies.
Trust in healthcare professionals and access to good information were also key factors.
“Receiving a clear diagnosis and an explanation of the cause of bleeding episodes was described as important,” the researchers wrote. “Access to medical information contributed to a sense of security, which was described as central to viewing the future more positively.”
The researchers said that to their knowledge, the study was the first of its kind to explore patients’ and families’ experiences, “highlighting the need for further research.”
“This study underscores the profound impact of [acquired hemophilia] on both patients and relatives, emphasising the need for improved knowledge, more structured psychosocial support, and greater involvement of relatives in care,” they wrote.
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