Health Related Quality of Life Regarding Physical and Physiological Parameters in Children suffering from Sickle Cell Anemia
American Journal of Nursing Science
Volume 4, Issue 2, April 2015, Pages: 22-30
Received: Jan. 31, 2015;
Accepted: Feb. 10, 2015;
Published: Feb. 27, 2015
Views 2545 Downloads 222
Lamiaa Ahmed Elsayed, Pediatric Nursing Department, Faculty of Nursing, Ain shams University, Cairo, Egypt; Faculty of Nursing, Umm Al Qura University, Makkah Al- Mukarramah, KSA
Sahar Mahmoud El-Khedr Abd El-Gawad, Pediatric Nursing Department, Faculty of Nursing, Tanta University, Tanta, Egypt; Faculty of Nursing, Umm Al Qura University, Makkah Al- Mukarramah, KSA
Background: Sickle cell disease is an inherited blood disorder characterized by a chronic hemolytic anemia that contributes to painful crises. It is an autosomal recessive disorder caused by production of abnormal hemoglobin S and is associated with high morbidity and mortality. It may influence the quality of life of children, who may require more frequent hospital care. This study aimed to compare health related quality of life regarding physical and physiological parameters between children suffering from sickle cell Anemia and healthy children. A comparative study that was conducted at Outpatient Clinic and Pediatric Hematological Department in selected hospital at Makkah Al-Mukaramah. A purposive sample composed of 80 children was classified into two groups, 40 healthy children and 40 children suffering from SCD both groups fulfilling certain inclusion and exclusion criteria. Tools: First tool was an observation checklist that was composed of three parts. Second tool was Pediatric Quality of Life Inventory that was used to assess children's quality of life. Results: Most of the children suffering from SCA had low level of QOL physical, social and emotional wellbeing subcategories as compared to healthy children and statistical significant differences were found. There were statistical significant difference regarding weight, arm circumference physical parameters and respiration, systolic blood pressure and oxygen saturation physiological parameter. It was concluded that, sickle cell anemia affect the quality of life of children suffering from it & There are differences in quality of life between children with sickle cell disease and healthy children. Recommendations: Awareness of parents regarding sickle cell disease helps in improving children's quality of life. Develop an educational program for parents regarding the prevention of sickle cell crises.
Lamiaa Ahmed Elsayed,
Sahar Mahmoud El-Khedr Abd El-Gawad,
Health Related Quality of Life Regarding Physical and Physiological Parameters in Children suffering from Sickle Cell Anemia, American Journal of Nursing Science.
Vol. 4, No. 2,
2015, pp. 22-30.
Yawn B.P., George R., Buchanan M.D., etal., Management of Sickle Cell DiseaseSummary of the 2014 Evidence-Based Report by Expert Panel Members JAMA. 2014;312(10):1033-1048.
Creary M, Williamson W, & Kulkarni R.: Sickle Cell Disease: Current Activities, Health Implications, and Future Directions. J. Womens Health (Larchmt) .2007;16:575–82.
Makani J., Williams TN, & Marsh K. Sickle cell disease in Africa: Burden and Research Priorities. Ann Trop Med Parasitol. (2007); 101:3–14.
Jastaniah W, Epidemiology of Sickle Cell Disease in Saudi Arabia, Annals of Saudi Medicine, 2011 May-Jun; 31 (3):289-293.
Mansour M., Mohammed I., Abdullah S., Alherbish A., Ahmed A., & Al-omar.,The Prevalence of Sickle Cell Disease in Saudi children and adolescent, Saudi Med,. Journal Volume, 2008; 29(10)-1481-1483.
Julie A., Sylvia T., Cristiane B., Timothy L. , Bogdan D., Sandra Sherman-B., Christy B., and James W., Peds QLTM Multidimensional Fatigue Scale in Sickle Cell Disease: Feasibility, Reliability, and Validity., Pediatric Blood Cancer 2014;61:171–177.
Michael RD, Vichinsky E., Behrman RE, Jenson HB, Stanton BF, Hemoglobinopathies In Kliegman , Nelson Textbook of pediatrics. 18th ed. New Delhi: Elsevier Publication;. p. 2026. (2008).
Gustafson S.L.,: Knowledge and Health Beliefs of Sickle Cell Disease and Sickle Cell Trait: the Influence on Acceptance of Genetic Screening for Sickle Cell Trait., Master theses, University of Pittsburgh. ( 2006).
Xandra W.,1 Janneke Hatzmann, Elske E., Johanna H. Marjolein Peters, Karin F., and Martha G. Quality of Life of Female Caregivers of Children with Sickle Cell Disease: a Survey, Haematological 2008; 93(4):588-593.
Asnani MR, Reid ME., Ali SB, Lipps G, & Williams-Green P., Quality of life in Patients with Sickle Cell Disease in Jamaica: Rural-Urban Differences, Rural and Remote Health. 2008; 8: 890.: http://www.rrh.org.au.
Claster, S., & Vichinsky, E. P., Managing Sickle Cell Disease. BMJ, (2003); 327(7424), 1151-1155.
Joshua J, Vichincky E., & DeBaun M., Overview of the Management and Prognosis of Sickle Cell Disease, Wolters Kluwer, Literature Review Current through: Dec 2014. Available at, http://www.uptodate.com/contents/overview-of-the-management-and-prognosis-of-sickle-cell-disease.
Hand L. Sickle Cell Treatment Guideline Released. Medscape Medical News. Available at http://www.medscape.com/viewarticle/831603. Accessed September 14, 2014.
Kumar S, Powars D, Allen J, & Haywood LJ. Anxiety , Self-concept, Personal and Social Adjustment in Children with Sickle Cell Anemia. J Pediatr, 2005; 88: 859-63.
Varni, J.W., Burwinkle, T. M., Seid, M., & Skarr, D. The Peds QL, as a Pediatric Population Health Measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, (2003); 3, 329-341.
Jastaniah. W.,: Epidemiology of Sickle Cell Disease in Saudi Arabia, Annals Saudi Medicne, May-Jun 2011; 31(3): 289–293.
Manish S., Julie M., Albert N K., Tolu A., Charles R N., Kevin M., and Thomas N W., An Observational Study of Children with Sickle Cell Disease in Kilifi, Kenya, Br,. J., Haematol. Sep 2009; 146(6): 675–682.
Ibrahim ,D Cardiac Involvement in Sickle Cell Anemia in Children ,Master Thesis ,Faculty of Medicine ,Cairo university. (2003).
Panepinto J., A., Pajewski Nicholas M., Foerster Lisa M., Svapna Sabnis, Raymond G. Hoffmann:2009: Impact of Family Income and Sickle Cell Disease on the Health-Related Quality of Life of Children. Qual Life Res (2009) 18:5–13 .Pages from,9412-8.
Al-Saqladi A.w.., Bin-Gadeen H.A. & Brabinb, J., Growth In Children And Adolescents With Sickle Cell Disease In Yemen, W. S. Maney & Son Ltd., Annals of Tropical Paediatrics (2010) 30, 287–298.
Valavi E., Ansari M.J. & zandian K., How to Reach Rapis Diagnosis in Sickle cell disease? Iran J Pediatr, Mar (2010); 20(1):69-74.
Akohoue SA, Shankar S, Milne GL, et al. Energy Expenditure, Inflammation, and Oxidative Stress in Steady-State Adolescents with Sickle Cell Anemia. Pediatric Res 2007; 61:233–8.
Moreira G.A., Respiratory Repercussions of Sickle Cell Anemia, J. bras. pneumol. vol.33 no.3 São Paulo May/June 2007, available at http://dx.doi.org/10.1590/S1806-37132007000300002.
David R., Guidelines For The Management Of The Acute Painful Crisis In Sickle Cell Disease, British Journal of Haematology, 2003, 120, 744–752.
Asnani M.R., Lipps GE., & Reid M.E. , Utility of WHOQOL-BREF in Measuring Quality of life in sickle Cell Disease, Health Quality of Life Outcomes, 2009,7-75. Available at: http://www.hqlo.com/content/7/1/75
Palermo, T. M., Schwartz, L., Drotar, D., & McGowan, K. Parental report of Health Related Quality of Life in Children with Sickle Cell Disease, J Behav Med. 2002 Jun;25(3):269-83 .
Center for Children withSpecial Needs, Sickle cell disease: Critical Elements of Care, 5 th. ed., (2012)., www.cshcn.org.
Barakat, L., Patterson, C., Daniel, L., & Dampier, C. Quality of life among Adolescents with Sickle Cell Disease: Mediation of Pain by Internalizing Symptoms and Parenting Stress. Health and Quality of Life Outcomes, (2008); 6 (60), p 1-9.
Archana B., Patel, and Habib G., Quality of life in Children with Sickle Cell Anemia Hemoglobinopathy.,Indian J of Ped.,2005; 72(7) .,567-5.