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通过日记自我报告对镰状细胞病儿童和青少年在家中管理疼痛的特征。

Characteristics of pain managed at home in children and adolescents with sickle cell disease by using diary self-reports.

作者信息

Dampier Carlton, Ely Beth, Brodecki Darcy, O'Neal Patricia

机构信息

Marian Anderson Comprehensive Sickle Cell Anemia Center, St Christopher's Hospital for Children, and MCP Hahnemann University, Philadelphia, PA 19134-1095, USA.

出版信息

J Pain. 2002 Dec;3(6):461-70. doi: 10.1054/jpai.2002.128064.

Abstract

Pain can begin in the first year of life for individuals with sickle cell disease (SCD) and continue in an unpredictably recurrent manner throughout their life span. Sickle vaso-occlusive pain (sickle pain) can also occur simultaneously with pain of other origins, complicating both assessment and management. Aims of this research were to describe the reliability and validity of a daily diary for data collection with children and adolescents with SCD and to describe characteristics of vaso-occlusive sickle pain episodes (VOE) and other pain reported by children and adolescents with SCD along with home pain management strategies. Thirty-nine children and adolescents (mean age, 10.9 +/- 3.6 years) completed diaries twice daily at home for up to 3 years (mean, 417.9 +/- 272.2 diary days) with excellent compliance. Sickle pain alone was reported on 8.4% of days (n = 1515 days), whereas other pain occurred on 2.7% of days (n = 490) and both sickle pain and other pain on 5.7% (n = 1041 days). Other pain only episodes were shorter and involved fewer sites than sickle pain only episodes. Sickle pain occurred in the extremities and hips, whereas most other pain occurred in the head-neck area. Analgesic medication was taken on 85% of days of sickle pain, whereas analgesics were taken on only 60% of days with other pain. The diary used in this study is a valid and reliable self-report tool. The use of home diaries will improve the understanding of sickle pain and its management and assist in identifying other pain syndromes that may require alternative management.

摘要

对于患有镰状细胞病(SCD)的个体而言,疼痛可能在生命的第一年就开始出现,并在其整个生命周期中以不可预测的复发方式持续存在。镰状血管阻塞性疼痛(镰状疼痛)也可能与其他原因引起的疼痛同时发生,这使得评估和管理都变得复杂。本研究的目的是描述一种日常日记对于收集SCD儿童和青少年数据的可靠性和有效性,并描述血管阻塞性镰状疼痛发作(VOE)的特征以及SCD儿童和青少年报告的其他疼痛,同时描述家庭疼痛管理策略。39名儿童和青少年(平均年龄10.9±3.6岁)在家中每天完成两次日记,持续长达3年(平均417.9±272.2个日记日),依从性良好。仅报告镰状疼痛的天数占8.4%(n = 1515天),而其他疼痛出现的天数占2.7%(n = 490天),镰状疼痛和其他疼痛都出现的天数占5.7%(n = 1041天)。仅其他疼痛发作比仅镰状疼痛发作持续时间更短且涉及部位更少。镰状疼痛发生在四肢和臀部,而大多数其他疼痛发生在头颈区域。85%的镰状疼痛日服用了镇痛药,而只有60%的其他疼痛日服用了镇痛药。本研究中使用的日记是一种有效且可靠的自我报告工具。使用家庭日记将有助于更好地理解镰状疼痛及其管理,并有助于识别可能需要不同管理方法的其他疼痛综合征。

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