Haemophilia A: patients' knowledge level of treatment and sources of treatment-related information

There are minimal or no data regarding the extent of patient and/or parent/legal guardian/caregiver knowledge about haemophilia A and its treatment, their sources for this information, or their preferred methods of communication. A pilot study using a survey instrument developed by haemophilia nurse coordinators was conducted at a national meeting to obtain information on these topics. A total of 187 surveys were completed. More than 80% of respondents reported high and high-medium knowledge levels about how haemophilia A is inherited, types of bleeding, identifying and treating bleeding emergencies, prophylaxis and on-demand treatment, travel and vacation planning and guidelines for exercise and sports activities. However, a lower proportion of respondents (< 65%) reported high and high-medium knowledge levels for drug-related topics. The majority of respondents (> 55%) consistently ranked healthcare providers as the most useful source of information for most topics related to haemophilia A. This pilot survey of well-informed respondents identified deficits in knowledge regarding factor concentrates for the treatment of haemophilia A and highlights the need for healthcare providers to provide more information about factor concentrates, insurance coverage for treatments, and community and educational resources. Additional study is necessary to determine the extent of knowledge deficits and how best to address them in the haemophilia A population as a whole. Other areas of study needed are whether information deficits and delivery of information vary by age or by other factors.