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Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders
Author(s) -
Limperg P. F.,
Joosten M. M. H.,
Fijnvandraat K.,
Peters M.,
Grootenhuis M. A.,
Haverman L.
Publication year - 2018
Publication title -
haemophilia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.213
H-Index - 92
eISSN - 1365-2516
pISSN - 1351-8216
DOI - 10.1111/hae.13420
Subject(s) - medicine , psychosocial , haemophilia , quality of life (healthcare) , attendance , health related quality of life , pediatrics , clinical psychology , psychiatry , disease , nursing , economics , economic growth
Background This study assesses health‐related quality of life ( HRQOL ), and variables associated with HRQOL , in children and adolescents with haemophilia and congenital bleeding disorders ( CBD ) in the Netherlands. Methods Patients <18 years with CBD under treatment at the Hemophilia Comprehensive Care Center of the Academic Medical Center were included. Participants completed generic HRQOL questionnaires ( TAPQOL 0‐5 years; Peds QL 6‐18 years). Differences and effect sizes in HRQOL compared to healthy peers, and between hemophilia severity groups, were tested using Mann Whitney U‐tests. Multivariate regression analyses were performed to assess variables associated with HRQOL . Results Data of 145 patients (81%) were analyzed (N = 32 with severe haemophilia). Children (0‐12 years) show no significant impairments in HRQOL compared to healthy peers. Adolescent boys (13‐18 years) with CBD report a slightly higher HRQOL on the total and emotional functioning scales than healthy peers (small‐moderate effect sizes). In contrast, adolescent girls experience lower HRQOL on total, social functioning and psychosocial health scales compared to healthy peers (moderate effect sizes). No differences between severity groups were found in HRQOL , but more problem behaviour was found in young boys (0‐5 years) with severe haemophilia. Male gender, participation in sports and school attendance are positively associated with HRQOL . Parental country of birth, type of treatment and number of bleeds are not associated with HRQOL . Conclusion Continuing monitoring HRQOL in daily clinical practice for children with CBD is important, since possible influencing psychosocial factors can change over time, with special focus on adolescent girls, sports participation and school absence.