A repeated theme of entries on this site reflects the application of self-management to an increasingly wide array of chronic illnesses. Bleeding disorders, particularly hemophilia, illustrates this point. Julie Barlow and colleagues in the UK highlighted the point by describing a survey of information and self-management needs of patients with hemophilia. They contacted 1,082 members of the UK Haemophilia Society. Of this number, 307 took part in the survey. The mean age of the respondents was 52.4 years, with 85% male, 96% white, and 66% with hemophilia A. Of this group, 90% felt that there was a lack of understanding among the public regarding bleeding disorders, 76% felt that health professionals understood their health and information needs, and 32% had experienced problems managing anxiety and/or depression. The respondents believed there was a 'stigma' attached to having a bleeding disorder, and almost half are very careful about informing others that they had a bleeding disorder. Self-efficacy was relatively high within the sample, however. Many respondents wanted to be kept informed about current research and the opportunity to participate in research. Women experienced a greater need for more information than men, particularly in the area of the 'medical management' and 'emotional' topics. Men appeared to need more information and/or training on 'physical' aspects such as physiotherapy and joint replacement.

COMMENTS: Barlow and her coworkers concluded that their study provided an insight into the educational and self-management needs of those affected by bleeding disorders, while highlighting the importance of providing accessible information. They are correct in this observation. Having hemophilia is bad enough, but having to cope with both the disorder and the stigma attached to it has been a difficult challenge in the past 25 years. All one has to do is recall the shadow cast over these patients in the early days of HIV/AIDS. Many were shunned because they developed the virus through no fault of their own: they were infected through the blood transfusions they had required. These patients showed uncommon courage in face of such a double whammy of both the disorder and its treatment. One only has to recall the courage displayed by Ryan White, the American youngster with hemophilia, who appealed to the nation for understanding in the face of his impending death. The intolerance he faced was a sad moment in the life of the country.

J.H. Barlow et al. Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia, 2007;13:264-270.