Mackie Andrew S, Rempel Gwen R, Islam Sunjidatul, Rankin Kathryn, McCurdy Corinne, Vonder Muhll Isabelle, Magill-Evans Joyce, Nicholas David, Kovacs Adrienne H
Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.
Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
Congenit Heart Dis. 2016 Mar-Apr;11(2):136-43. doi: 10.1111/chd.12300. Epub 2015 Oct 8.
The population of young adults with congenital heart disease (CHD) or a heart transplant (HTx) is growing rapidly. These survivors require lifelong cardiology care and must assume self-management responsibilities with respect to their health. Accordingly, we sought to assess psychosocial maturity and validity of the Transition Readiness Assessment Questionnaire (TRAQ) in this population.
The study was designed as a cross-sectional observational study.
The study was set at tertiary-care pediatric and adult cardiology clinics in Edmonton and Toronto, Canada.
The patients were 18- to 25-year-olds with moderate or complex CHD or a HTx in childhood.
Participants completed validated instruments including the TRAQ, Erickson's Psychosocial Stage Inventory (EPSI), and Kenny's Parental Attachment Questionnaire (PAQ).
We enrolled 188 participants (41% women), 109 (58%) having moderate CHD, 64 (34%) complex CHD, and 15 (8%) with a HTx. Mean age for those followed in a pediatric clinic was 21.3 ± 2.3 years, compared with 21.8 ± 2.3 years for those attending an adult clinic (P = 0.20). All questionnaire scores were similar among participants with moderate CHD vs. complex CHD vs. an HTx, and among participants followed in a pediatric clinic vs. an adult clinic. EPSI and PAQ scores were similar to those of healthy populations, though perception of maternal overprotection was common. TRAQ scores increased with age. A response of "not needed for my care" to 5 or more of the 29 TRAQ items was provided by 110 (75%) participants.
Age, but not disease severity should be a factor when considering the transition needs of young adults with heart disease. The TRAQ has important limitations in the adult CHD/HTx population and a cardiac-specific measure of transition readiness is needed.
患有先天性心脏病（CHD）或接受过心脏移植（HTx）的年轻成年人数量正在迅速增长。这些幸存者需要终身的心脏病学护理，并且必须对自身健康承担自我管理责任。因此，我们试图评估该人群的心理社会成熟度以及过渡准备评估问卷（TRAQ）的有效性。
该研究设计为横断面观察性研究。
该研究在加拿大埃德蒙顿和多伦多的三级医疗儿科和成人心脏病学诊所进行。
患者为18至25岁，童年时期患有中度或复杂性CHD或接受过HTx。
参与者完成了经过验证的工具，包括TRAQ、埃里克森心理社会阶段量表（EPSI）和肯尼父母依恋问卷（PAQ）。
我们招募了188名参与者（41%为女性），其中109名（58%）患有中度CHD，64名（34%）患有复杂性CHD，15名（8%）接受过HTx。在儿科诊所接受随访的参与者平均年龄为21.3±2.3岁，而成人诊所的参与者平均年龄为21.8±2.3岁（P = 0.20）。在患有中度CHD与复杂性CHD与接受HTx的参与者之间，以及在儿科诊所与成人诊所接受随访的参与者之间，所有问卷得分均相似。EPSI和PAQ得分与健康人群相似，不过母亲过度保护的观念较为常见。TRAQ得分随年龄增长而增加。110名（75%）参与者对29项TRAQ项目中的5项或更多项回答为“我的护理不需要”。
在考虑患有心脏病的年轻成年人的过渡需求时，年龄而非疾病严重程度应作为一个因素。TRAQ在成人CHD/HTx人群中有重要局限性，需要一种针对心脏疾病的过渡准备度测量方法。
