Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease.
Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease.
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DOI：
10.1097/mph.0000000000000177
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发表时间：
2015-03
期刊：
影响因子：
--
通讯作者：
Panepinto JA
中科院分区：
文献类型：
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作者：
Beverung LM;Varni JW;Panepinto JA
健康相关生活质量（HRQL）指标提供有关疾病评估的信息;然而，医疗保健提供者可能不愿意使用HRQL评估，因为评分可能很难解释。我们试图确定镰状细胞病（SCD）儿童疼痛相关HRQL受损的水平。儿童（n=251）在一项多中心研究中完成了PedsQL™通用核心量表和PedsQL™ SCD模块。使用PedsQL™ SCD模块的疼痛和伤害以及疼痛影响量表的儿童项目评分，创建高、中、低功能组。我们将功能组与疼痛、伤害和疼痛影响量表评分进行比较，以确定代表高和低HRQL的水平。将这些评分与疾病严重程度和PedsQL™通用核心量表进行比较。PedsQL™ SCD疼痛和伤害以及疼痛影响量表评分60分或以下与重度疾病相关，并符合PedsQL™通用核心量表功能受损的要求。疼痛和伤害以及疼痛影响量表的评分为81分或更高，可视为SCD中这些领域的HRQL良好。或者，60分或更低的分数是引起关注的原因，并表明SCD中HRQL受损的区域。
Health-related quality of life (HRQL) measures provide information about disease assessment; however, healthcare providers may be reluctant to use HRQL assessments as scores can be difficult to interpret. We sought to identify levels for impaired pain-related HRQL in children with sickle cell disease (SCD). Children (n=251) completed the PedsQL™ Generic Core Scales and PedsQL™ SCD Module in a multisite study. Using children’s item scores on the Pain and Hurt and Pain Impact scales of the PedsQL™ SCD Module, High, Intermediate, and Low Functioning groups were created. We compared functioning groups to the Pain and Hurt and Pain Impact scale scores to determine levels representing high and low HRQL. These scores were compared to disease severity and the PedsQL™ Generic Core Scales. Scores of 60 or below on the PedsQL™ SCD Pain and Hurt and Pain Impact scales were associated with severe disease and met requirements for impaired functioning on the PedsQL™ Generic Core Scales. Scores of 81 or higher on the Pain and Hurt and the Pain Impact scales can be considered consistent with good HRQL in those domains in SCD. Alternately, scores of 60 or lower are cause for concern and suggest areas of HRQL impairment in SCD.