{"title":"成年镰状细胞病患者的生活质量。","authors":"Valerie Mann-Jiles, Diana Lynn Morris","doi":"10.1111/j.1745-7599.2009.00416.x","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this descriptive study was to examine quality of life (QOL) in adult patients with sickle cell anemia, hemoglobin SC, or hemoglobin S beta thalassemia.</p><p><strong>Data sources: </strong>Data were collected from a convenience sample of 62 adult patients (18 years of age and older) with sickle cell disease (SCD) in an outpatient clinic devoted to the care of hematological and oncological disorders. Burckhardt and Anderson's 16-item self-report Quality of Life Scale (QOLS) and a demographic questionnaire were used for data collection.</p><p><strong>Conclusions: </strong>The average QOLS scores for healthy populations are 90. The overall mean QOL score in this study of 83.6 (SD = 13.2) was lower than those of the general population. In this study, scores ranged from 52 to 112. Approximately 35% (n = 22) of participants' scores ranged from 52 to 75; approximately 35% (n = 22) of participants' scores ranged from 75 to 85; and approximately 30% (n = 17) of participants' scores ranged from 85 to 112. Other results were nonsignificant for all variables except the variable that assessed the extent to which participants consider themselves to be spiritual. Future research is needed to further the understanding of the impact of QOL in adults with SCD.</p><p><strong>Implications for practice: </strong>A better understanding of adult patients with SCD QOL may ultimately improve healthcare services for this population. The findings could lead to future research that can identify factors that most impact the QOL of people living with SCD.</p>","PeriodicalId":50020,"journal":{"name":"Journal of the American Academy of Nurse Practitioners","volume":"21 6","pages":"340-9"},"PeriodicalIF":0.0000,"publicationDate":"2009-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/j.1745-7599.2009.00416.x","citationCount":"49","resultStr":"{\"title\":\"Quality of life of adult patients with sickle cell disease.\",\"authors\":\"Valerie Mann-Jiles, Diana Lynn Morris\",\"doi\":\"10.1111/j.1745-7599.2009.00416.x\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>The purpose of this descriptive study was to examine quality of life (QOL) in adult patients with sickle cell anemia, hemoglobin SC, or hemoglobin S beta thalassemia.</p><p><strong>Data sources: </strong>Data were collected from a convenience sample of 62 adult patients (18 years of age and older) with sickle cell disease (SCD) in an outpatient clinic devoted to the care of hematological and oncological disorders. Burckhardt and Anderson's 16-item self-report Quality of Life Scale (QOLS) and a demographic questionnaire were used for data collection.</p><p><strong>Conclusions: </strong>The average QOLS scores for healthy populations are 90. The overall mean QOL score in this study of 83.6 (SD = 13.2) was lower than those of the general population. In this study, scores ranged from 52 to 112. Approximately 35% (n = 22) of participants' scores ranged from 52 to 75; approximately 35% (n = 22) of participants' scores ranged from 75 to 85; and approximately 30% (n = 17) of participants' scores ranged from 85 to 112. Other results were nonsignificant for all variables except the variable that assessed the extent to which participants consider themselves to be spiritual. Future research is needed to further the understanding of the impact of QOL in adults with SCD.</p><p><strong>Implications for practice: </strong>A better understanding of adult patients with SCD QOL may ultimately improve healthcare services for this population. The findings could lead to future research that can identify factors that most impact the QOL of people living with SCD.</p>\",\"PeriodicalId\":50020,\"journal\":{\"name\":\"Journal of the American Academy of Nurse Practitioners\",\"volume\":\"21 6\",\"pages\":\"340-9\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2009-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://sci-hub-pdf.com/10.1111/j.1745-7599.2009.00416.x\",\"citationCount\":\"49\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of the American Academy of Nurse Practitioners\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1111/j.1745-7599.2009.00416.x\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of the American Academy of Nurse Practitioners","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1111/j.1745-7599.2009.00416.x","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Quality of life of adult patients with sickle cell disease.
Purpose: The purpose of this descriptive study was to examine quality of life (QOL) in adult patients with sickle cell anemia, hemoglobin SC, or hemoglobin S beta thalassemia.
Data sources: Data were collected from a convenience sample of 62 adult patients (18 years of age and older) with sickle cell disease (SCD) in an outpatient clinic devoted to the care of hematological and oncological disorders. Burckhardt and Anderson's 16-item self-report Quality of Life Scale (QOLS) and a demographic questionnaire were used for data collection.
Conclusions: The average QOLS scores for healthy populations are 90. The overall mean QOL score in this study of 83.6 (SD = 13.2) was lower than those of the general population. In this study, scores ranged from 52 to 112. Approximately 35% (n = 22) of participants' scores ranged from 52 to 75; approximately 35% (n = 22) of participants' scores ranged from 75 to 85; and approximately 30% (n = 17) of participants' scores ranged from 85 to 112. Other results were nonsignificant for all variables except the variable that assessed the extent to which participants consider themselves to be spiritual. Future research is needed to further the understanding of the impact of QOL in adults with SCD.
Implications for practice: A better understanding of adult patients with SCD QOL may ultimately improve healthcare services for this population. The findings could lead to future research that can identify factors that most impact the QOL of people living with SCD.