Siebrasse Alisa, Allen Sydney, Lavoie Julie, Snippen Janessa, Saudek David
Medical College of Wisconsin, 8701 Watertown Plank Rd., Wauwatosa, WI, 53226, USA.
Children's Hospital of Wisconsin, 9000 West Wisconsin Ave., Milwaukee, WI, 53226, USA.
Pediatr Cardiol. 2019 Dec;40(8):1569-1574. doi: 10.1007/s00246-019-02188-y. Epub 2019 Sep 5.
Mortality from surgical repair of tetralogy of Fallot (TOF) has decreased dramatically over the last several decades. Despite excellent surgical outcomes, studies reveal that patients with TOF continue to have decreased physical functioning, academic difficulties, and psychosocial impairments. We hypothesized that administering a validated quality-of-life assessment to patients with TOF during routine cardiology follow-up visits would help identify deficits and increase referrals to appropriate interventional programs. Between May 2017 and November 2018, TOF patients (5-20 years) and/or their families completed a standardized quality-of-life assessment (PedsQL 4.0) during cardiology clinic visits. Providers were encouraged to refer patients with abnormal PedsQL 4.0 scores to appropriate services including cardiovascular rehabilitation, psychological evaluation, neurodevelopmental testing, and school intervention. Referrals for the intervention group were compared to those of a control group using χ analysis. The PedsQL 4.0 was completed by 79 patients at 90 clinic visits. At least one abnormal PedsQL 4.0 score was identified in 58% (52/90) of patient encounters, and of those 52 encounters, 38% (20/52) received at least one referral for intervention. The most commonly placed referrals were for neurodevelopmental testing (16) and school intervention (11). When comparing the number of referrals from the intervention group to those of the control group, referrals to all intervention services were statistically significant (p < 0.05). Our quality improvement initiative successfully utilized a quality-of-life assessment to detect deficits and subsequently increased the number of referrals to intervention services. Future studies will address barriers that prevent completion of the PedsQL and assess how interventions impact quality-of-life scores.
在过去几十年中，法洛四联症（TOF）手术修复的死亡率显著下降。尽管手术效果极佳，但研究表明，TOF患者的身体功能、学业困难和心理社会障碍仍持续存在。我们假设，在常规心脏病学随访期间对TOF患者进行经过验证的生活质量评估，将有助于识别缺陷并增加转介至适当干预项目的比例。在2017年5月至2018年11月期间，TOF患者（5至20岁）及其家人在心脏病学门诊就诊时完成了标准化的生活质量评估（儿童生活质量量表4.0版，PedsQL 4.0）。鼓励医疗服务提供者将PedsQL 4.0评分异常的患者转介至适当的服务，包括心血管康复、心理评估、神经发育测试和学校干预。使用χ分析将干预组的转介情况与对照组进行比较。79名患者在90次门诊就诊时完成了PedsQL 4.0评估。在58%（52/90）的患者就诊中至少发现了一项PedsQL 4.0评分异常，在这52次就诊中，38%（20/52）的患者至少获得了一次干预转介。最常见的转介是神经发育测试（16次）和学校干预（11次）。将干预组的转介数量与对照组进行比较时，所有干预服务的转介在统计学上均有显著差异（p < 0.05）。我们的质量改进计划成功地利用生活质量评估来发现缺陷，并随后增加了干预服务的转介数量。未来的研究将探讨阻碍完成PedsQL的障碍，并评估干预措施如何影响生活质量评分。
