Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study.
Integrated Collection of Patient-Reported Outcomes and Experiences in Children with Kidney and Hematological Diseases: A Pilot Study.
复制标题
DOI：
10.3390/children10071245
复制
发表时间：
2023-07-19
期刊：
影响因子：
2.4
通讯作者：
Jankauskiene, Danguole
中科院分区：
文献类型：
--
作者：
Azukaitis, Karolis;Puronaite, Roma;Vaitkeviciene, Goda Elizabeta;Trinkunas, Justas;Jankauskiene, Augustina;Jankauskiene, Danguole
关键词：
本研究以肾脏及血液系统疾病儿童为例，探讨在有特殊医疗需要的儿童(CSHCN)中，整合电子收集患者报告的结果和经验措施(PROM和PREM)的可行性和潜在相关性。我们对18岁的儿童进行了一项横断面、单中心研究。儿童(≥10岁)和他们的父母通过RedCap平台接受到他们的电子邮件地址的通用PedsQL Core Scale 4.0和定制的PREM调查，结果被整合到医院的电子健康记录系统中。共有192例患者入选，其中98例为肾脏疾病，94例为血液病。总体回复率为51%，完成每份代理问卷的中位数时间约为3分钟。毕业舞会的分数在情感和学校功能维度上最低。在诊断建立过程中更有利的经历与身体、社会、学校功能和胎膜早破总分的较高分数相关。对医院环境的更好评估与更高的社会功能相关，而更好的信息提供与更高的身体功能和胎膜早破总分相关。我们的数据表明，在CSHCN人群中对PROM和PREM进行综合电子收集是可行的，但需要努力提高应答率。PROMS和PREMS之间的关联表明，未来需要进行研究，探索在医疗服务水平上有针对性的干预措施，以改善患者的主观结果。
We aimed to explore the feasibility and potential relevance of integrated electronic collection of patient-reported outcome and experience measures (PROM and PREM) in children with special healthcare needs (CSHCN) by using the example of children with kidney and hematological diseases. We performed a cross-sectional, single-center study of children <18 years of age. Children (≥10 years) and their parents received Generic PedsQL Core Scale 4.0 and custom PREM surveys to their email addresses via the REDCap platform, and the results were integrated into the hospital’s electronic health records system. A total of 192 patients (98 with kidney diseases and 94 with hematological diseases) were enrolled. The overall response rate was 51%, and the median time for completion of each proxy questionnaire was approximately three minutes. The lowest PROM scores were observed in the emotional and school functioning dimensions. More favorable experiences in the diagnosis establishment process were associated with higher scores in physical, social, school functioning, and total PROM scores. A better evaluation of the hospital’s environment was associated with higher social functioning, while better information provision correlated with higher physical functioning and total PROM scores. Our data indicates that integrated electronic collection of PROMs and PREMs in the population of CSHCN is feasible, but efforts to increase the response rate are needed. The associations between PROMs and PREMs suggest that future studies exploring targeted interventions at the healthcare service level to improve subjective patient outcomes are needed.
登录
查看更多内容
影响因子：
2.9
作者：
Doyle C;Lennox L;Bell D
通讯作者：
Bell D
影响因子：
2.6
作者：
Bele S;Teela L;Zhang M;Rabi S;Ahmed S;van Oers HA;Gibbons E;Dunnewold N;Haverman L;Santana MJ
通讯作者：
Santana MJ
DOI：
10.1017/s0021963099005211
发表时间：
2000-03-01
期刊：
JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY AND ALLIED DISCIPLINES
影响因子：
--
作者：
Meijer, SA;Sinnema, G;Wolters, WHG
通讯作者：
Wolters, WHG
影响因子：
1.5
作者：
Arsiwala T;Afroz N;Kordy K;Naujoks C;Patalano F
通讯作者：
Patalano F
影响因子：
120.7
作者：
Detmar, SB;Muller, MJ;Aaronson, NK
通讯作者：
Aaronson, NK