Impact of hemophilia on quality of life of affected children and their parents, a hospital based cross sectional study

Abstract

Background: Hemophilia can have a huge negative impact not only on the physical health but also on the psychological, economic and social well-being of the affected children and their family. Documentation of this negative impact on quality of life is vital in drawing the attention of relevant stakeholders to design and implement appropriate interventions.Methods: This was a cross sectional study, Children with hemophilia aged 4 to 12 years, and their parents who were attending the Pediatric Hematology Clinic of the Advanced Pediatric Centre, PGIMER, Chandigarh, between July 2009 and June 2010 were included in the study. The Hemo-QoL questionnaire was used to assess the quality of life after translation into local language and validation.Results: The study included 51 children with 10 children in 4-7 years age group and 41 children in 8-12 years age group and their parents. Perceived impact on family (77.3±14.7), poor physical health (62.9±29.8), sports and school (53.8±22.8) had the highest negative impact on QoL. Support from friends, family, and other persons seemed to have contributed positively towards the quality of life. Parents of older children had higher mean subscale scores in View of yourself subscale as compared to parents of younger children (40.8±14.2 vs 23.7±33.0, p value 0.018). Under Sports and school subscale also similar pattern was observed (48.2±20.7 Vs 34.1±13.8, P value 0.045).Conclusions: The Quality of life was poor both among children affected with hemophilia and their parents. Perceived impact on family, poor physical health and inability to participate in school/sports activities are the major contributors to poor QoL. Support from family, friends, and others is vital in maintaining QoL. The QOL worsens with increasing age of the child in both children and their parents.

The societal burden of haemophilia A. I – A snapshot of haemophilia A in Australia and beyond

“…HRQoL is also significantly influenced by target join disease as shown across five European countries in the CHESS study 29 . Reductions in quality of life are typically associated with poor physical health; inability to participate in sports, recreational or leisure activities; missed school or work; the perception of self; and the impact on the family 30‐34 . In addition, complications, such as joint issues have a significant negative impact on HRQoL.…”

The Effect of Family-Oriented Empowerment on Life Satisfaction and Happiness of Patients with Hemophilia: A Quasi-Experimental Study

“…This decline in life satisfaction and happiness could be attributed to the presence of complications and the overall diminished quality of life experienced by these patients. Previous research has also highlighted the poor quality of life in hemophilia patients (20) and a connection between the condition and mental health issues (3).…”