Uzark Karen, King Eileen, Spicer Robert, Beekman Robert, Kimball Thomas, Varni James W
Pediatric Cardiology, University of Michigan Mott Children's Hospital, Ann Arbor, MI 48109, USA.
Congenit Heart Dis. 2013 May-Jun;8(3):211-8. doi: 10.1111/chd.12002. Epub 2012 Sep 12.
Children with congenital heart disease may experience significant psychosocial morbidity related to impaired quality of life (QOL). The aim of this study was to evaluate the clinical utility of health-related QOL assessment in a pediatric cardiology outpatient clinic.
The Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales were completed by a convenience sample of 176 patients, aged 8-18 years, being seen in a pediatric cardiology clinic. Three cardiologists enrolled in this study reviewed the completed PedsQL during the clinic visit and recorded their responses to items reported to be a problem "Often" or "Almost Always." This utilization of the instrument was compared to standardized scoring and the practicality and perceived usefulness of the practice was evaluated by physician interview.
PedsQL responses showed 38% of patients reporting significant (Often or Almost Always) problems on at least one domain (19% Physical Functioning, 18.2% Emotional Functioning, 11.4% Social Functioning, and 22.3% School Functioning problems). Using standardized scoring, the prevalence of scores below the cutoff score for clinically significant impaired QOL in each domain ranged from 10% to 20%, with agreement between scoring methods ranging from 89% to 93%, sensitivity 68% to 86%, and specificity 89% to 97%. Cardiologists reported interventions in 30.1% of patients. They found that the PedsQL was easy to use, did not interfere with clinic operations, required minimal time (1-5 minutes), and provided information that had an important impact on their practice in some patients.
This study demonstrates the clinical utility of health-related QOL assessment using the PedsQL in a pediatric cardiology outpatient setting. Identification of significant impairments in QOL can impact clinical decision making and may change psychosocial outcomes in children with congenital heart disease.
患有先天性心脏病的儿童可能会经历与生活质量（QOL）受损相关的严重心理社会问题。本研究的目的是评估在儿科心脏病门诊中与健康相关的生活质量评估的临床实用性。
采用便利抽样法，让176名年龄在8至18岁的儿科心脏病门诊患者完成《儿童生活质量量表》（PedsQL）4.0通用核心量表。参与本研究的三位心脏病专家在门诊期间审查了完成的PedsQL，并记录了他们对报告为“经常”或“几乎总是”存在问题的项目的回答。将该工具的这种使用方式与标准化评分进行比较，并通过医生访谈评估该做法的实用性和感知有用性。
PedsQL的回答显示，38%的患者在至少一个领域报告有严重（经常或几乎总是）问题（身体功能方面为19%，情绪功能方面为18.2%，社会功能方面为11.4%，学校功能方面为22.3%）。使用标准化评分，每个领域中生活质量临床显著受损的临界值以下分数的患病率在10%至20%之间，评分方法之间的一致性在89%至93%之间，敏感性在68%至86%之间，特异性在89%至97%之间。心脏病专家报告对30.1%的患者进行了干预。他们发现PedsQL易于使用，不干扰门诊操作，所需时间最少（1至5分钟），并提供了对他们在某些患者中的实践有重要影响的信息。
本研究证明了在儿科心脏病门诊环境中使用PedsQL进行与健康相关的生活质量评估的临床实用性。识别生活质量的显著损害可影响临床决策，并可能改变先天性心脏病儿童的心理社会结局。
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