Sickle Cell Disease Patient & Family Handbook

n REFERENCIAS ADAKVEO website. The power of protection against pain crisis with ADAKVEO. Retrieved from https://www.us.adakveo.com/ sickle-cell-disease/ Chen, E., Cole, S. W., & Kato, P. M. (2004). A review of empirically supported psychosocial interventions for pain and adherence outcomes in sickle cell disease. Journal of Pediatric Psychology, 29 (3), 197–209 en, E., Cole, S. W., & Kato, P. M. (2004). A review of empirically supported psychosocial interventions for pain and adherence outcomes in sickle cell disease. Journal of Pediatric Psychology, 29 (3), 197–209.N., Meneghello, L., … Sainati, L. (2010). Pulmonary hypertension in sickle cell children under 10 years of age. British Journal of Haemotology , 150 (5), 601–609. Harrington, J. K., & Krishnan, U. S. (2019). Pulmonary hypertension in children with sickle cell disease: A review of the current literature. Current Pediatrics Reports , 7 (2), 33–44. Colombatti, R., Maschietto, N., Varotto, E., Grison, A., Grazzina, N., Meneghello, L., … Sainati, L. (2010). Pulmonary hypertension in sickle cell children under 10 years of age. British Journal of Haemotology , 150 (5), 601–609. Harrington, J. K., & Krishnan, U. S. (2019). Pulmonary hypertension in children with sickle cell disease: A review of the current literature. Current Pediatrics Reports , 7 (2), 33–44. Jain, S., Bakshi, N., & Krishnamurti, L. (2017). Acute chest syndrome in children with sickle cell disease. Pediatric Allergy Immunology and Pulmonology, 3 0(4), 191–201 Kanter, L., & Kruse-Jarres, R. (2013). Management of sickle cell disease from childhood through adulthood. Blood Review, 27 (6), 279–287. Lee, E. J., Phoenix, D., Jackson, B. S., & Brown, W. (1999). The role of family: Perceptions of children with sickle cell. Journal of National Black Nurses’ Association, 10 (2), 37–45. Rab, M., van Oirschot, B. A., Bos, J., Merkx, T. H., Van Wesel, A., Abdulmalik, O., … van Wijk, R. (2019). Rapid and reproducible characterization of sickling during automated deoxygenation in sickle cell disease patients. American Journal of Hematology , 94 (5),575–584. Mayes, S., Wolfe-Christensen, C., & Mullins, L. L. (2011). Psychoeducational screening in pediatric sickle cell disease: An evaluation of academic and health concerns in the school environment . Childrens Health Care, 40, 101–115. Platt, A. F., Jr., & Sacerdote, A. (2002). Hope and destiny: A patient’s and parent’s guide to sickle cell disease and sickle cell trait. Roscoe, IL: Hilton Publishing. Platt, O. S., Rosenstock, W., & Espeland, M. A. (1984). Influence of sickle hemoglobinopathies on growth and development. New England Journal of Medicine, 311 (1), 7–12. Radcliffe, J., Barakat, L. P., & Boyd, R. C. (2006). Family systems issues in pediatric sickle cell disease. In R. T. Brown (Ed.), Comprehensive handbook of childhood cancer and sickle cell disease (pp. 496–513). New York, NY: Oxford University Press. Speller-Brown, B., Varty, M., Thaniel, L., & Jacobs, M. B. (2018). Assessing disease knowledge and self-management in youth with sickle cell disease prior to transition. Journal of Pediatric Oncology Nursing, 36 (2), 143–149. Telfair, J., Merriweather, F., & Vichinsky, E. (2004). A parent’s handbook for sickle cell disease, part II. Richmond, CA: State of California Department of Health Services, Genetics Disease Branch. U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute. (2014). Evidence-based management of sickle cell disease: Expert panel report, 2014. Retrieved from https://www.nhlbi.nih.gov/sites/ default/files/media/docs/sickle-cell-disease-report%20020816_0.pdf.

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