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Sin financiación 3.590 JCR (2018) Q2, 23/73 Hematology 1.163 SJR (2018) Q1, 32/135 Hematology No data IDR 2018 UEM

Introduction: Current conceptions of health, increasingly reaffirm the role and commitment of the family in the care, maintenance and optimizing the health of its members. When the diagnosis of disease affects one of its members, especially if this is a child such as hemophilia, an alteration of the system usually occurs. It is essential to know the coping strategies used by parents to avoid or prevent a family dysfunctionality. Aim. Analysis of coping strategies of families of children with hemophilia and their impact on family functioning. Methods: A cross‐sectional study with a sample of 44 fathers (average age: 38.89) of children with haemophilia from 1 to 12 years old. We recorded clinical characteristics of children, sociodemographic of parents, Family functioning (Faces III) and Coping Strategies (CSI). Results: The mean age of children was 6.86. An 88.6% had haemophilia A severe and the same proportion was in prophylactic treatment. The frequency of haemarthrosis was 79.5% and diagnosis of arthropathy in 15.9%, only an 11.4% presented inhibitor. The 56.8% of parents do not know to do treatment. The parents that their children had inhibitor and practiced the self‐treatment used problem‐solving, emotional expression and cognitive restructuring as strategies of coping (d = 0.45). Too, they presented a greater cohesion in the familiar functioning (P < 0.05). The same results we find that their children are arthropathy diagnosis. However, those parents that their children not had inhibitor employed the self‐criticism (P < 0.01) and the support social (d = 0.79) as strategies of coping and a greater perceived adaptation in the family functioning (P < 0.05).Problem‐solving as coping strategy is more used by parent than their children have more than 8 years old and a more distance from hospital they used social withdrawal. Discussion/Conclusion: We note that parents of children with hemophilia show good coping strategies to disease. The complications, that they are encountered, for the moment, do not affect their family functioning which will promote acceptance and adaptation of the child in the future. It is very important that professionals evaluate these family issues for better management and control of disease, both in the family and the child. Pfizer (research support) 2.768 JCR (2017) Q2, 32/71 Hematology 1.277 SJR (2017) Q1, 30/134 Hematology No data IDR 2017 UEM

Introduction: Hemophilia is a chronic disease, and as such it can affect the perceived competence of patients, especially children. A negative perception can result in psychosocial problems and maladjustment. A positive perception makes the person feel able to cope with the challenges of everyday life. Aim: Evaluate the self‐perception of children with hemophilia compared with group of children without disease, and assessing whether the disease affects their personal development. Methods: Cross‐sectional study. The sample was 58 children aged 8 to 12 years, 53% PHW and 47% healthy children, the average age 10.8 (SD: 1.20). We recorded clinical and physical data, the Self‐Perception Profile for Children (SPPC) and a Physical Activity Questionnaire (FELS‐PAQ). In the group of hemophilia we assess their status joint (HJHS) and physical functioning (HAL) children version. Results: PWH show good joint status (M = 5.87; SD = 8.7), and a physical functionality within the average (M = 69.29, SD = 29.1). There are no significant differences between healthy children and PWH in self‐perception, both show a high perception of themselves (M = 23.4, SD = 6.67). Regarding physical activity, we observe significant differences in Sport Index (P < 0.05) and Work Index (P < 0.01), in the latter, the healthy children are worse than PWH severe. Positive correlation between age and perception of sporting competence (r = 0.25) and negative correlation with BMI (r = −0.25). Positive correlation between age and total score of physical activity (r = 0.29) and Leisure index (r = 0.26). Positive correlation between the perception of sports competence and Leisure index (r = 0.30). Discussion/Conclusion: The impact of prophylactic treatment in children with hemophilia has involved a normalization in their lives. Differences with children without disease hardly exist, being essential to continue promoting adherence to treatment and education the child to their situation to achieve a good self‐care and autonomy throughout their life Sin financiación 2.768 JCR (2017) Q2, 32/71 Hematology 1.277 SJR (2017) Q1, 30/134 Hematology No data IDR 2017 UEM

Sin financiación 3.569 JCR (2016) Q2, 22/70 Hematology UEM

Sin financiación 3.569 JCR (2016) Q2, 22/70 Hematology UEM

Sin financiación 3.569 JCR (2016) Q2, 22/70 Hematology UEM

En el presente estudio instrumental examinamos la fiabilidad y validez estructural de la versión chilena de la Escala para la Detección de la Ansiedad Social (EDAS), utilizando una muestra de 1040 adolescentes (rango de edad entre 13 y 18 años). El análisis de validez indicó que en cada una de las subescalas (Evitación, Grado de ansiedad e Interferencia) tan sólo se apreció una sola dimensión que explicó más de un 40% de la varianza. Los coeficientes de fiabilidad obtenidos (alfa de Guttman- Cronbach y de Spearman-Brown) fueron altos en cada una de las subescalas. No se encontraron diferencias significativas debidas al sexo, a la edad y a la interacción entre el sexo y la edad, excepto el efecto debido a la edad en las subescalas Grado de Ansiedad e Interferencia. Los resultados, en general, aportan evidencia empírica a favor de la fiabilidad y la validez de la versión chilena de la EDAS. Se propone evaluar la relación entre EDAS y otros instrumentos similares en la población chilena.

Sin financiación 3.590 JCR (2018) Q2, 23/73 Hematology 1.163 SJR (2018) Q1, 32/135 Hematology No data IDR 2018 UEM

Introduction: Prophylactic treatment adherence is a critical factor in the control and evolution of patients with hemophilia, for the prevention of degenerative joint damage. The generalization of applications on mobile terminals, offers a therapeutic option in these patients, offering ample opportunities for therapeutic and preventive approach. The aim of this study is to assess the effectiveness of Haemophilia Medtep platform regarding adherence to prophylactic treatment. Methods: Have been recruited 46 patients with hemophilia A and B in prophylaxis, over 13 years in different regions of Spain. Patients were invited to use the platform Hemophilia Medtep that can maintain a record of their treatment and bleeding processes which present. The effectiveness of the platform has been evaluated with the Spanish version of the VERITAS‐Pro scale, recently validated by our group, which evaluates the time of application, dosage, planning, memory, skip and communication. It has also been evaluated the perception of quality of life with the Short Form‐36 Health Survey (SF‐36). For statistical analysis we used the Student t test and Pearson correlation coefficient. Results: The mean age of patients is 25.98 years (SD = 10.17), most with hemophilia A (86.7%) and severe phenotype (91.1%). 4% of the guest's patients were not registered to the platform and 11% did not activate your account. Table 1 data show participation. Of the total of patients registered and activated, 32 of them (82%) are still active after 6 months of use of therapeutic compliance platform with a reported 94%. After a month of use of the platform Hemophilia Medtep, significant differences in quality of life: Physical functioning (P < 0.05), Physical Function (P < 0.05), Vitality (P < 0.01) and physical component summary score (P < 0.01). There were also differences in adherence: Moment (P < 0.01), Planning (P < 0.05), Skip (P < 0.01) and Total (P < 0.01). Also there are correlations between completion and quality of life in general health (P = 0.299). Discussion/Conclusion: The use of Medtep platform helps patients with hemophilia to improve adherence to prophylactic treatment. 70% of patients remain active recording their data in Hemophilia Medtep at 6 months of starting the study. These findings open new possibilities for therapeutic and preventive treatments of these patients, especially younger ones. Grifols (financial suport) Medtep Inc. (financial suport) 2.768 JCR (2017) Q2, 32/71 Hematology 1.277 SJR (2017) Q1, 30/134 Hematology No data IDR 2017 UEM

Sin financiación 2.990 JCR (2019) Q2, 32/76 Hematology 1.151 SJR (2019) Q1, 29/134 Hematology No data IDR 2019 UEM

Sin financiación 3.569 JCR (2016) Q2, 22/70 Hematology UEM

Introduction: Improving the quality of life in PWH is a reality due to new treatments Coping strategies used by PWH to his illness, and therefore for its adaptation, could be a determining factor on improving their quality of life. Aim: We assess the coping strategies used by PWH adults and their relationship with their perception of quality of life. Methods: Cross‐sectional study. The sample was 63 PWH of 16–62 years. The average age 36.73 (SD: 15.20). 57% have severe hemophilia A, 35% on prophylaxis, and 71% practice self‐treatment. Only 13% have inhibitor, 64% without hemartrosis in the last year and 56% have arthropathy. 18% are HIV‐HCV coinfected. 32% have university studies, 54% are working and 57% are single. Clinical data sheet, quality of life questionnaire (SF–36) and Inventory coping strategies (CSI). Results: PWH without hemarthrosis, arthropathy, co‐infected, singles and younger have better quality of life, especially in the physical aspects and pain (P < 0.01). PWH married, who are working and without hemarthrosis used as coping Resolution of problems, Cognitive restructuring, Social support and Emotional expression (P < 0.05). Patients with more days of treatment employing less Emotional expression (r = −0.27) and Social withdrawal (r = −26). A greater distance from the hospital better quality of mental life (r = 0.25) and Social functioning (r = 0.24). We observed relationship between quality of life in mental health and coping strategies appropriate (r = 0.33). Worse physical and overall quality of life with inadequate coping strategies (r = −0.28). Discussion/Conclusion: The adequate coping strategies for PWH, promotes better adaptation and acceptance of their disease, allowing him a good quality of life. It is important that we work in promoting strategies of coping to promote well‐being in PWH Pfizer (grant/research support) 2.768 JCR (2017) Q2, 32/71 Hematology 1.277 SJR (2017) Q1, 30/134 Hematology No data IDR 2017 UEM