Quality of Life and Adolescents With Hemophilia

Hemophilia is an incurable hereditary bleeding disorder due to the absence or deficiency of clotting factors in the blood. This disease was traditionally classified as mild, moderate, and severe based on the level of coagulation factors. Individuals with hemophilia exists internationally and have many bleeds (Owaidah et al., 2018). Oftentimes, hemophilia causes flexion deformities of the elbows, knees, and hips interfering with the individuals’ daily activities. The aim of this review was to examine the literature which addressed quality of life for adolescents with hemophilia. A literature search was conducted using CINAHL and EBSCO databases using the keywords “blood disorders and adolescents”. Search refinement with keywords "quality of life and hemophilia and adolescents and nursing” resulted in 30 articles. The search was again refined to include only full text articles that were dated 2014 – 2019. The result was six articles. However, one article was specific for children and eliminated from the review. Findings from the review of the literature revealed hemophilia has an impact on the Health related quality of life (HRQoL) of patients and is influenced by severity of disease, bleeding rates, physical activity restriction, financial burden and treatment (Zhang, Huang, Kong, Ma & Fang, 2019). Furthermore, (Beheshtipoor, Bagheri, Hashemi, Zare, & Karimi, 2015) found a significant difference (p < 0.001) in quality of life and bleeding events for boys who participated in a yoga treatment group. However, (Neuner et al., 2016) conducted a study and found no difference in the health related quality of life between the hemophiliac patient and their siblings. While (McLaughlin et al., 2017) investigation of predictors of quality of life in patients with bleeding disorders found gender differences as it related to pain and patient adherence. Additionally, the majority of the studies were international (Beheshtipoor et al., 2015); (Neuner et al. 2016); (Zhang et al., 2019) with only one conducted in the United States (McLaughlin et al., 2017). Many factors influence quality of life for adolescents with Hemophilia and it is therefore important for nurses to understand there are means to assist in the improvement of health outcomes. Future research involving United States populations will strengthen existing literature.