Social representations of people with hemophilia in the United States and the United Kingdom

The Haemophilia Experiences, Results and Opportunities (HERO) initiative explored the psychosocial issues affecting patients with hemophilia. HERO included a qualitative study which included 150 interviews with patients, parents, and health care professionals (HCPs). In this analysis, the social representations theory is used to explore the social perceptions of hemophilia held by patients living in the United Kingdom (UK) and United States (US). Materials and Methods: The qualitative study included nine patients with hemophilia from the UK and 10 from the US. A thematic analysis of transcribed interviews was run using T-Lab software that is specifically designed for qualitative text analysis. Results: Five core themes were identified: problems with growth and feeling different, body pain, relationships with HCPs, family history, and the process of integration of care practices into everyday life. US patients were more concerned with aspects linked to the health care system, such as their relationship with HCPs and the cost of insurance, and focused on the economic consequences of hemophilia. In the HERO quantitative study, a higher percentage of patients from the US reported financial difficulties with obtaining product in the past five years, than the global population (77% vs. 62%). UK patients are more focused on aspects of pain, diversity, and disability in everyday life, both at school or at work. In the quantitative study, UK patients were more likely to report extreme or moderate pain interference in the past four weeks than the global population (42% vs. 26%). UK patients were more involved with the emotional experience of illness, noting that it is a source of stigma; other people (e.g. family members, friends) are mentioned for being overprotective rather than a source of support. Conclusion: Though they may not be completely representative of all patients from the US and UK, patients revealed themselves as social characters who are immersed in a system of learning and relationships with various people and institutions and it highlights the importance of considering numerous factors when assessing patients. Understanding the differences among subgroups does aid in assessing the impact of the considered variables on the patient’s hemophilia experience.