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      The Impact of Educating Parents of Leukemic Children on the Patients’ Quality of Life

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          Abstract

          Background

          The quality of life of children with leukemia is reduced by fear and anxiety of parents after diagnosis, lack of information about the disease, treatments, and care of the child. This study aims to evaluate the effect of educating parents of leukemic children on the patients’ quality of life.

          Methods

          In this interventional study, sixty parents of ALL children who met inclusion criteria were selected using simple random sampling method, and assigned to the experimental and control groups. The study tool included a valid and reliable questionnaire (TNO-AZL), that was filled in through interview by parents before and two months after the intervention for both groups. The first part of the questionnaire included demographic items and the second part (7 dimensions, each with 8 sections) contained questions related to the quality of life. The scores could range between 56 and 280 and a higher score represented a better quality of life. The intervention included three one-hour classes composed of lecture and question-answer sessions which were held for groups of 4-6 participants, accompanied by a booklet.

          Results

          Before the intervention, the quality of life score in the experimental and control groups was 180.83±14.43 and 174.28±20.72, respectively; after the intervention, these figures changed to 226.9±11.76 and 174.41±20.42 respectively. Paired samples T-test proved a significant increase in the quality of life in the experimental group.

          Conclusion

          Parent education successfully increased the quality of life of leukemic children; therefore, parental consultation sessions and educational programs are recommended.

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          Most cited references30

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          Risk Factors for Acute Leukemia in Children: A Review

          Although overall incidence is rare, leukemia is the most common type of childhood cancer. It accounts for 30% of all cancers diagnosed in children younger than 15 years. Within this population, acute lymphocytic leukemia (ALL) occurs approximately five times more frequently than acute myelogenous leukemia (AML) and accounts for approximately 78% of all childhood leukemia diagnoses. Epidemiologic studies of acute leukemias in children have examined possible risk factors, including genetic, infectious, and environmental, in an attempt to determine etiology. Only one environmental risk factor (ionizing radiation) has been significantly linked to ALL or AML. Most environmental risk factors have been found to be weakly and inconsistently associated with either form of acute childhood leukemia. Our review focuses on the demographics of childhood leukemia and the risk factors that have been associated with the development of childhood ALL or AML. The environmental risk factors discussed include ionizing radiation, non-ionizing radiation, hydrocarbons, pesticides, alcohol use, cigarette smoking, and illicit drug use. Knowledge of these particular risk factors can be used to support measures to reduce potentially harmful exposures and decrease the risk of disease. We also review genetic and infectious risk factors and other variables, including maternal reproductive history and birth characteristics.
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            Health-related quality of life in children with newly diagnosed cancer: a one year follow-up study

            Background Most studies on health-related quality of life (HRQOL) in children with cancer focussed on survivors. Only few studies have evaluated patients during ongoing oncological treatment. The aim of this study was a prospective assessment of HRQOL in children during the first year after diagnosis of cancer and an examination of demographic, medical, and parental predictors of HRQOL. Methods Fifty-two patients (mean age: 10.9 years) were assessed 6 weeks and 1 year after diagnosis with the TNO-AZL Questionnaire for Children's Health-Related Quality of Life. Parents completed the Brief Symptom Inventory. Results Compared to a community sample, patients reported more physical complaints, reduced motor functioning and autonomy, and impaired positive emotional functioning 6 weeks after diagnosis. HRQOL significantly improved over the year. However, at 1 year, patients still showed reduced motor and emotional functioning. At 6 weeks, children with leukemia were most affected. At 1 year, patients with brain tumors complained about more physical symptoms than the other groups. Intensity of treatment and presence of medical complications mainly influenced HRQOL at 6 weeks but less at 1 year. Parental psychopathology was associated with better cognitive functioning in the child. Conclusion This prospective study found several domains of HRQOL to be compromised 6 weeks and 1 year after the diagnosis of cancer. Although HRQOL significantly increased over the year, there were important differences between diagnostic groups. The findings highlight the importance of repeated evaluation of HRQOL in children undergoing cancer treatment and consideration of specific differences between diagnostic groups.
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              Short- and long-term effects of acute myeloid leukemia on patient health-related quality of life.

              Patients with acute myeloid leukemia (AML) may receive aggressive therapies (e.g., chemotherapy and bone marrow transplantation (BMT)) that are thought to significantly affect HRQL. Therefore, the goal of this study was to assess the HRQL impact on patients of AML and its treatments. An electronically assisted literature survey and synthesis was conducted of English-language literature published worldwide between 1990 and 2002. The review was enhanced by inclusion of articles, including those published before 1990, which were manually identified from the bibliographies of the electronically identified publications. Articles were analyzed with respect to HRQL instruments used, HRQL domains assessed, aspects of disease and treatment evaluated, and outcomes observed. The survey identified 21 articles that warranted review. AML and associated treatments have a substantial negative impact on patient HRQL as has been measured by several different leukemia-specific, cancer-specific and generic instruments. The most negative HRQL burden is apparent soon after the diagnosis of the disease and during the course of therapy. Long-term survivors appear to recover HRQL almost completely with respect to physical, psychological and emotional well being, but incur continued sexual dysfunction. Clinicians responsible for the care of patients with AML should be aware of the HRQL impact of the disease and its treatment, in the long-term as well as the short-term. Researchers should evaluate the HRQL impact of new and investigational therapies.
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                Author and article information

                Journal
                Iran Red Crescent Med J
                Iran Red Crescent Med J
                Kowsar
                Iranian Red Crescent Medical Journal
                Kowsar
                2074-1804
                2074-1812
                August 2011
                01 August 2011
                : 13
                : 8
                : 550-555
                Affiliations
                [1 ]Nursing and Midwifery College, Shiraz University of Medical Sciences, Shiraz, Iran
                [2 ]Hematology Re-search Center, Nemazee Hospital, Shiraz University of Medical Sciences, Shiraz, Iran
                Author notes
                [* ]Correspondence: Fatemeh Hashemi, MSc, Instructor of Pediatric Nursing Group, Nursing and Midwifery College, Shiraz University of Medical Sciences, Shiraz, Iran. Tel.: +98-711-6473239, Fax: +98-711-6473239, E-mail: hashemif@ 123456sums.ac.ir
                Article
                3371991
                22737526
                9c6813c8-c4a6-4de3-a8c9-72f100420f94
                Copyright © 2011, Kowsar M.P. Co.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 20 January 2011
                : 09 May 2011
                Categories
                Original Article

                Medicine
                leukemia,children,iran,education,parent
                Medicine
                leukemia, children, iran, education, parent

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