Glanzmann’s Impacts Patients & Caregivers
Patients/Caregivers report significant psychosocial impact of GT
ASH 2014 (San Francisco, December 6-9) To assess the impact Glanzmann’s Thrombasthenia (GT) has on patients and caregivers, adults with GT and parents of children with GT were requested to respond to an internet survey. Fourteen adults and 9 parents of children with GT responded. According to data presented at the American Society of Hematology (ASH) 2014 Annual Meeting, the most frequently reported symptoms included: bruising (83%), gum/mouth/tooth bleeding (46%), nose bleeds (58%), and abnormal menstrual cycles (21%). It took an average of 23 months for patients to receive a hematology referral since their first bleed and 33 months to get a confirmed diagnosis of GT. In addition, most adults (93%) and majority of children (67%) found that GT impacted school. Adults (87%) as well as children (78%) agreed that it also effected their participation in activities/sports during their childhood. Furthermore, GT also impacted relationships with friends and peers for children (56%) and adults (40% during childhood, 20% currently). When looking at the data collected from the parents, it was found that having a child with GT impacted their (44%) or their spouse’s (22%) employment. Additionally, most respondents were very/quite satisfied with the support from spouses (79%), family (76%), and friends (83%), but less so with support from schools (56%) and employers (50%).
This survey was sponsored by Novo Nordisk Inc.