In addition, clinical trials will be required to assess whether dose tailoring gives good long-term clinical outcomes and whether this can be achieved using methods based on reduced sampling. The authors thank the members of the Steering Committee of the International Prophylaxis Study Group [Dr. Victor Blanchette, Canada, (Chair); Dr. Lou Aledort, USA (Co-Chair); Dr. Rolf Ljung, Sweden (Co-Chair);
Dr. Brian Feldman (Canada); Dr. Alessandro Gringeri (Italy); Dr. Marilyn Manco-Johnson (USA); Dr. Pia Petrini (Sweden); Dr. Georges Rivard (Canada); Dr. Wolfgang Schramm (Germany); Dr. Marijke van den Berg (The Netherlands)]; and Marj McLimont, Co-ordinator of the International Prophylaxis Study Group (IPSG) for assistance during preparation of this manuscript. The
IPSG is a not-for-profit study group that is supported by unrestricted grants MI-503 mouse from Bayer HealthCare LLC, Biological Products Division; Baxter BioScience; Pfizer; CSL Behring and Novo Nordisk administered through The Hospital for Sick Children Foundation, Toronto, Canada. None of the authors received remuneration Dabrafenib price for preparation of this manuscript and the industry sponsors of the IPSG were not involved with writing of the manuscript. The views expressed in the manuscript are those of the authors alone and are endorsed by the Steering Committee of the IPSG. “
“Evidence delineating the effects of haemophilia on interpersonal relationships is sparse and largely outdated, failing to reflect the impact of current treatment strategies.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). medchemexpress 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.