Shared appointments improve hemophilia patient experience

For children born with hemophilia or other blood-clotting disorders, staying healthy and preventing complications requires a lot of effort. Treatment can be performed at home, but involves administering an IV two or three times a week – a task that can be cumbersome to parents and difficult for children. To help patients and their families understand the importance of treatment, learn from others experiencing the same successes and struggles and help ease the process, University Hospitals Rainbow Babies & Children’s Hospital now offers shared medical appointments for hemophilia patients.

“We created this new treatment approach to help patients better comply with the treatment necessary to keep them healthy. Although patients may feel good, proactive treatment is essential to help reduce complications down the line,” explains Sanjay P. Ahuja, MD, MSc, MBA, Medical Director of the Hemostasis and Thrombosis Center at UH Rainbow Babies & Children’s Hospital.

Treatment needs

Children with hemophilia – mainly boys – are born with a deficiency in a protein that helps their blood clot. As a result, they are at risk for prolonged bleeding and are more likely to experience bleeding into their joints – a complication that patients may not notice, but can cause joint problems and disability later on if left untreated. The key to avoiding complications is to proactively replace the missing protein through multiple, weekly IV infusions.

“Many hemophilia patients require joint replacement surgery early in life, some as young as 18 years old,” says Dr. Ahuja. “With the shared medical appointments, we are trying to educate families on the importance of preventing these problems through early and consistent treatment.”

Benefits of shared appointments

With a grant from the National Hemophilia Foundation, in partnership with the Northern Ohio Hemophilia Foundation, UH Rainbow Babies & Children’s Hospital recently began the new program. The hospital groups six to eight patient families with similar goals and needs to share appointments at least twice a year. Together, they discuss challenges and share tips for success. A nurse facilitator and social worker also guide an informal education session where group members can ask questions.

During the appointment, each patient still meets privately with his physician for a medical exam. However, sharing time with the educators provides more opportunity to ask questions. It also creates a valuable learning experience.

“In every group session, we share experiences and support,” explains Dr. Ahuja. “In one recent appointment, a high school-age patient was sitting next to a young boy who was anxious about learning to administer the IV himself. By talking with someone who had been doing it for years, it gave the young patient a different and more confident perspective. It is something we cannot teach patients in an appointment alone.”

Unique approach to care

Shared medical appointments are a fairly new and growing trend in patient care. In fact, UH first began the practice among prenatal care patients at UH MacDonald Women’s Hospital. Dr. Ahuja believed the same approach to care could benefit hemophilia patients.

“Our main goal is to improve quality of care for these patients,” says Dr. Ahuja. “Shared appointments allow families to have better access to education as well as benefit from sharing with and learning from others.”

Schedule an appointment

Visit RainbowBabies.org or call 216-UH4-KIDS (216-844-5437) to schedule a shared medical appointment today.

Sanjay Ahuja

SANJAY P. AHUJA, MD
Medical Director, Hemostasis and Thrombosis Center, UH Rainbow Babies & Children’s Hospital
Associate Professor, Case Western Reserve University School of Medicine

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