Impact of haemophilia on children and their caregivers

The CHESS Paeds study addressed the paucity of data on the impact of disease burden on the daily lives of children with haemophilia A and their caregivers. The findings indicate that both children and caregivers make sacrifices in their daily lives because of haemophilia A [1].

CHESS Paediatrics is a retrospective study assessing the burden of illness in children with moderate and severe haemophilia A with or without FVIII inhibitors. The study includes data from sites in France, Germany, Italy, Spain, and the United Kingdom [2]. The current analysis, presented by Dr Kate Khair (Great Ormond Street Hospital for Children, UK), evaluated 196 children with haemophilia A (25.5% with moderate and 74.5% with severe disease). As expected, the majority of these children were receiving prophylaxis (72.4%) and did not have FVIII inhibitors (89.8%) [1].

There was a direct impact of disease burden on children with haemophilia A, particularly regarding physical and social activities. Both children and caregivers indicated a reduced physical activity due to haemophilia A in 48.0% of children with moderate and 57.5% of children with severe haemophilia A. Reduced social activity was indicated by 46.0% and 57.5%, respectively. A total of 36.0% and 61.0% of children with moderate and severe haemophilia A, respectively, had adapted their treatment in anticipation of physical or social activity. Furthermore, 34.0% of children with moderate haemophilia A and 55.4% of children with severe haemophilia A were frustrated due to their disease, and a comparable percentage felt that they had missed opportunities.

Caregivers also reported spending a substantial amount of time caring for the haemophilia-related needs of their child. They provided a median of 19.0 and 12.0 hours a week of care for the haemophilia-related needs of their children with moderate or severe haemophilia A, respectively.

1. Khair K, et al. Effect of Moderate and Severe Hemophilia a on Daily Life in Children and Their Caregivers: A CHESS Paediatrics Study Analysis. 62^nd ASH Annual Meeting, 5-8 December 2020. Abstract 147.
2. Dasmahapatra P, et al. Treatment patterns, determinants and outcomes of hemophilia: Results from a multinational survey. P249, 12^th Annual Congress of EAHAD 6-8 February 2019.

Posted on 18 February 202117 May 2024