Information and self-management needs of people living with bleeding disorders: a survey

The aim of the study was to conduct a survey of information and self-management needs among members of the UK Haemophilia Society (HS). Of 1082 members mailed, 307 took part in the survey, the mean age was 52.4 years (SD 14.8), 85% were male, 96% white and 66% were living with haemophilia A. 90% felt that there is a lack of understanding amongst 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. Results suggest that there was a 'stigma' attached to having a bleeding disorder and almost half are very careful about informing others that they have a bleeding disorder. Self-efficacy was relatively high within the sample. 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. The study provides an insight into the educational and self-management needs of those affected by bleeding disorders and highlights the importance of providing accessible information.