Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
复制标题
DOI：
10.1371/journal.pone.0074549
复制
发表时间：
2013
期刊：
影响因子：
3.7
通讯作者：
Sung L
中科院分区：
文献类型：
--
作者：
Johnston DL;Nagarajan R;Caparas M;Schulte F;Cullen P;Aplenc R;Sung L
小儿癌症治疗期间的健康相关生活质量 (HRQL) 评估非常重要。本研究的目的是描述在儿科急性髓系白血病 (AML) 临床试验中未能提供 HRQL 评估的原因。我们专注于多中心儿科 AML 临床试验中嵌入的 HRQL 评估。 PedsQL 4.0 通用核心量表、PedsQL 3.0 急性癌症模块、PedsQL 多维疲劳量表和儿童家长量表是在最多六个时间点从家长/监护人受访者处获得的。孩子们可选择提供自我报告。一名中央研究协调员联系了有不良 HRQL 数据的站点。三位儿科肿瘤学家评估了未能提交 HRQL 评估的原因，并使用主题分析生成了主题。该分析包含 906 项已完成的评估和 1091 项潜在评估（83%）。纳入儿童的中位年龄为 12.9 岁（范围 2.0 至 18.9 岁）。未完成的五个主题是：病人病得太重；被诉人被动或主动拒绝；发育迟缓；后勤挑战；从受访者和机构的角度来看，对研究过程的了解不足。我们确定了积极治疗期间未完成 HRQL 评估的原因。这些信息将有助于提出改进研究流程和未来 HRQL 研究设计的建议，以最大限度地提高响应率。
Health related quality of life (HRQL) assessments during therapy for pediatric cancer are important. The objective of this study was to describe reasons for failure to provide HRQL assessments during a pediatric acute myeloid leukemia (AML) clinical trial. We focused on HRQL assessments embedded in a multicenter pediatric AML clinical trial. The PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and Pediatric Inventory for Parents were obtained from parent/guardian respondents at a maximum of six time points. Children provided self-report optionally. A central study coordinator contacted sites with delinquent HRQL data. Reasons for failure to submit the HRQL assessments were evaluated by three pediatric oncologists and themes were generated using thematic analysis. There were 906 completed and 1091 potential assessments included in this analysis (83%). The median age of included children was 12.9 years (range 2.0 to 18.9). The five themes for non-completion were: patient too ill; passive or active refusal by respondent; developmental delay; logistical challenges; and poor knowledge of study processes from both the respondent and institutional perspective. We identified reasons for non-completion of HRQL assessments during active therapy. This information will facilitate recommendations to improve study processes and future HRQL study designs to maximize response rates.
登录
查看更多内容
影响因子：
3.6
作者：
de Vries, Machteld A. G.;van Litsenburg, Raphaele R. L.;Gemke, Reinoud J. B. J.
通讯作者：
Gemke, Reinoud J. B. J.
影响因子：
6.2
作者：
Varni, JW;Burwinkle, TM;Dickinson, P
通讯作者：
Dickinson, P
影响因子：
3
作者：
Varni, JW;Seid, M;Kurtin, PS
通讯作者：
Kurtin, PS
影响因子：
1.2
作者：
Banks, Brie Ann;Barrowman, Nicholas J.;Klaassen, Robert
通讯作者：
Klaassen, Robert
影响因子：
3.8
作者：
Carter, Andrea;Landier, Wendy;Bhatia, Smita
通讯作者：
Bhatia, Smita