Haemophilia Experiences, Results and Opportunities (HERO) Study: Influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia

Abstract

Evidence delineating the effects of haemophilia on interpersonal relationships is sparse and largely outdated, failing to reflect the impact of current treatment strategies. HERO (Haemophilia Experiences, Results and Opportunities) was commenced to garner a more comprehensive understanding of psychosocial issues facing persons with haemophilia (PWH). This article describes the findings of the quantitative HERO survey relating to the influence of haemophilia on interpersonal relationships of adult PWH, and parents/caregivers of children with haemophilia. Separate questionnaires were completed by adult PWH and parents of minor children from 10 countries, including satisfaction with support from partners, family, friends and other social contacts; disclosure of haemophilia and carrier status and family dynamics. A total of 675 PWH and 561 parents completed the survey. Over half of PWH (57%) and parents (84%) were married. Most PWH were satisfied with support from partners (94%), family (90%) and friends (85%), with lower percentages reported among those with inhibitors. Most parents were likewise satisfied with support from partners (88%) and family (83%). Whereas PWH were reticent to disclose their diagnosis beyond family and friends, parents were more likely to share their son's diagnosis, and most were satisfied with the support from their son's peers (74%), teachers (83%) and other adults in supervisory roles (85%). PWH and parents surveyed were satisfied overall with the support they received from partners, family, friends and social contacts. Relationships are affected by haemophilia in various ways, and particularly affected in terms of disease burden, age and social life.

Preventing lives affected by hemophilia: A mixed methods study of the views of adults with hemophilia and their families toward genetic screening

“…Despite their very different ways of knowing and experiencing hemophilia, both families and adults were largely united, not only in their support of screening, but also their disapproval of its uses for termination purposes. This finding underscores the centrality of direct lived experience to reproductive views and decisions, and the importance of considering the experiential knowledge of family members as well as those diagnosed with genetic disease, particularly parents and siblings whose lives are often fundamentally altered, albeit in different ways, by a hemophilia diagnosis in the family (Cassis et al, ; von der Lippe, Frich, Harris, & Solbrække, ).…”

Predictors of quality of life among adolescents and young adults with a bleeding disorder

“…To our knowledge, limited data are available regarding the HRQoL of AYAs with hemophilia. In contrast to previous surveys, such as Hemophilia Experiences, Results and Opportunities (HERO), that assessed psychosocial issues in PWH [31–33], we assessed adherence using the validated VERITAS scale and used the SF-36 (vs the EuroQoL-5 dimensions [EQ-5D]) to assess HRQoL. The SF-36 assesses domains such as vitality and social functioning, which are not included in the EQ-5D [34].…”

Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support

“…Even so, their well‐being may be conditioned to some extent because the illness has followed its course, and their physical condition is not the same as in their youth. They may have doubts about their competence at some point, expectations to fulfil or feelings of vulnerability . Some studies have described how haemorrhagic episodes and the physical consequences of haemophilia threaten the patient's psychological and social well‐being, beyond just physical functioning, thus affecting his QoL .…”

“…Evidence from studies on this topic in PWHs is sparse and outdated. The advances in treatment options and the use of secondary prophylaxis have changed the impact of disease on family and social dynamics and functioning, so many authors advocate the importance of studying this area both in parents of children with haemophilia and adult PWHs .…”