Psychosocial care for children with haemophilia and their parents in the Netherlands

Abstract

By providing this overview of psychosocial support offered and by sharing this knowledge, psychosocial care can become more structured and consistent between HCCCs around the world. Potentially, processes and outcomes of care can be improved.

Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

“…However, a slightly higher HRQOL in adolescent boys with CBD than peers was not expected, even though effect sizes are small. An explanation may be that boys with CBD at the HCCC receive adequate treatment and psychosocial care from an extensive multidisciplinary team; support for parents by a social worker, a psychologist for children, psychoeducational and peer‐related activities, and interventions related to coping, leading to good emotional functioning and overall HRQOL.…”

“…As the introduction of prophylactic treatment, to prevent bleeding and disability, the HRQOL of patients with CBD has increased tremendously . In addition, children in the Netherlands receive extensive multidisciplinary psychosocial care, which is not common . Despite being able to provide care at home (eg more independence), haemophilia is a complex disease to manage and the responsibility for management of the disease, such as administration of treatment by intravenous infusion of clotting factor concentrate, is burdensome .…”

“…5 In addition, children in the Netherlands receive extensive multidisciplinary psychosocial care, which is not common. 6 Despite being able to provide care at home (eg more independence), haemophilia is a complex disease to manage and the responsibility for management of the disease, such as administration of treatment by intravenous infusion of clotting factor concentrate, is burdensome. 7 Also, children with CBD still endure difficulties and impairments, such as emergency hospital visits, frequent injections and barriers in travel, educationaland sport activities.…”

“…HCCC uses the "KLIK" system as part of standard care to monitor and discuss HRQOL. 6,20 KLIK (in Dutch: Kwaliteit Leven In Kaart, in English: quality of life in clinical practice) is a webbased tool developed for the use of PROs in daily clinical practice. 21 It is designed to monitor HRQOL and improve the communication about HRQOL and psychosocial issues between the healthcare provider and patient.…”

Hemofilia: abordaje diagnóstico y terapéutico

“…En la actualidad, la calidad de vida de los niños con hemofilia ha mejorado gracias a la profilaxis y la posibilidad de realizar el tratamiento en casa; sin embargo, continúan teniendo muchas dificultades, entre ellas la práctica de algunos deportes, lo que genera un impacto sobre su desarrollo sicosocial. Este aspecto puede tener alguna mejoría si se logra capacitar a los pacientes para que tengan autonomía en el manejo de algunas de estas situaciones [24].…”