Psycho‐social determinants of quality of life in children and adolescents with haemophilia—a cross‐cultural approach

Abstract

Quality of life (QoL) of children with chronic conditions has received increasing attention in recent years. While frequent paediatric health conditions and life-threatening conditions are in the foreground, QoL of children with rare diseases such as haemophilia is scarce. While haemophilia-specific instruments to assess QoL in children have been developed, cross-cultural comparison of QoL and its determinants has not been addressed so far. QoL and potential psychosocial determinants such as coping were assessed in 298 paediatric haemophilia patients from six European countries demonstrating significant differences in QoL between countries. Results indicated that psychosocial predictors varied across countries, although life satisfaction and social support explained the highest proportion of variance and, moreover, superseded clinical characteristics. These findings suggest that intervention programmes should be geared towards enhancing psychosocial resources in children and adolescents with haemophilia.

Quality of Life in Hemophilia

“…The Haemo-QoL questionnaire also showed that the initial burden induced by prophylaxis in younger children is highly compensated by improvements in HRQoL in older children, as indicated by impaired scores in the dimension "feeling" in smaller children and improved scores in the dimension "school and sport" in older children [99]. These psychosocial predictors varied across countries, although life satisfaction and social support explained the highest proportion of variance [101]. These psychosocial predictors varied across countries, although life satisfaction and social support explained the highest proportion of variance [101].…”

Poor quality of life among untreated Thai and Cambodian children without severe HIV symptoms

“…Chronic illness can worsen QOL in children, but the extent of this worsening may vary across cultures and countries (Bullinger & von Mackensen, 2008). HIV infection is a chronic illness that left untreated results in high morbidity and mortality as well as poor QOL in children (Bong et al, 2007).…”

Is There Evidence for Neurocognitive Dysfunctions in Patients with Postnatal HIV Infection? A Review on the Cohort of Hemophilia Patients

“…As is well documented in the literature, HIV and hemophilia have a very significant psycho-social impact on patients, their families, and society in general, including psychological, cognitive, emotional, and social effects. These illnesses have important and durable effects on the individual, especially in the transition from adolescence where patients need to address a number of adaptations, ranging from greater demands for self-management of their health care, the impact of their illness on their emerging sexuality and independence, and the often difficult transition from familiar pediatric health care settings to unfamiliar adult providers (e.g., Brown et al, 2000; Pumariega et al, 2006; Steele et al, 2007; Bullinger and von Mackensen, 2008; Riva et al, 2010; Schmälzle et al, 2011; Dekoven et al, 2013; von Mackensen et al, 2013). …”