Shared decision-making (SDM) is a process in which a patient and their health care team work together to make decisions about medical care, based on the belief that patients have the right to be informed of all their relevant treatment choices and should be a part of their own treatment decisions.
In SDM for hemophilia, people with hemophilia and their health care teams work together to make decisions about the management and treatment of their condition. This includes careful consideration of their relevant life goals, aspirations, and preferences, along with a balanced consideration of the available evidence, risks, and benefits associated with each treatment option.
Studies have shown that SDM keeps patients engaged in their treatment, ensures that they are educated about their options, leads to higher longitudinal health care quality, improves treatment adherence, and increases patient satisfaction.
“Shared decision-making is a valuable approach incorporating patient preferences and goals to inform treatment decisions over time,” says Amy Dunn, M.D., director of pediatric hematology at Nationwide Children’s Hospital in Columbus, Ohio.
There is growing interest in SDM in the scientific literature on hemophilia, supported by evidence indicating that well-designed SDM tools can help people compare treatment options and make more informed decisions. In response to signals from the scientific literature on the urgency for an SDM tool in hemophilia in an evolving and increasingly complex treatment landscape, and the absence of evidence that unequivocally supports the use of one treatment option over other reasonable options for all patients, the World Federation of Hemophilia (WFH) saw the need to develop an SDM tool for the community.
Partnering with people with hemophilia, patient advocacy groups, and health care practitioners, WFH developed the tool over two years and launched it in August 2023. The online platform guides patients and health care teams through the process of identifying patient preferences and priorities, provides balanced information on the risks and benefits of all treatment options, and helps to facilitate treatment-related discussions between patients and health care teams.
Since its launch, more than 3,500 people from 110 countries have used the tool. It is available in English, French, and Spanish, with translations in German, Dutch, and Japanese underway. The tool will be updated every six months to incorporate new data and evidence on treatments.