Department of Adult Congenital Heart Disease Ghent, Ghent University Hospital, Corneel Heymanslaan 10, B-9000, Ghent, Belgium.
Department of Pediatric Cardiology, Ghent University Hospital, Ghent, Belgium.
Eur J Pediatr. 2023 Sep;182(9):3917-3927. doi: 10.1007/s00431-023-05020-1. Epub 2023 Jun 23.
The transition towards adult-focused healthcare comprises a complex process requiring careful, individualized guidance of adolescents with congenital heart disease (CHD). Detailed data on their preferences regarding disease-related information and acquirable transitional skills are mostly lacking. We examined the preferences of CHD adolescents in the early transition stage.
A cross-sectional descriptive study was performed with adolescents recruited from a transition program. Two questionnaires assessing needs for information and transitional skills were used. Only questionnaires completed in the early transition stage were included.
Forty-nine adolescents participated (mean age 15.9 ± 1.2 years, 43% girls). 59% requested information about their heart and previous and/or future surgeries/interventions, 45% about sports and medication, and a maximum of 27% about psychosocial topics. More girls than boys requested surgical information (76% versus 46%; p = 0.04). Adolescents with severely complex CHD more often requested information about medication than those with moderately complex CHD (63% versus 28%; p = 0.02). Older adolescents were less likely to request surgical information (OR = 0.53; 95%CI [0.26-0.88]; p = 0.03). Up to 83% of the adolescents perceived their skills as insufficient, but less than 14% was interested in acquiring skills. Conclusion: Adolescents were mainly interested in medical topics, followed by lifestyle information. The informational needs tended to decrease with age. Timely gauging individual needs and delivering information, ideally in the early teens, appear important when providing person-tailored transitional care in CHD. Paradoxically, although the transitional skills were low-perceived, there was limited motivation to improve them. This paradox requires further investigation to better tailor transition interventions. Clinical trial registration: Not applicable.
• Transition towards adult life and care requires careful patient guidance. A person-tailored approach is strongly encouraged. However, details on preferences regarding disease-related information and transitional skills are scarce in adolescents with CHD.
• This study showed that adolescents with CHD in early transition mainly need medical-related information. Their informational needs tend to decrease with age necessitating timely gauging for interest and delivering information. Adolescents report a low need to acquire transitional skills despite low self-esteemed skills levels.
向以成人为中心的医疗保健转变是一个复杂的过程，需要对患有先天性心脏病 (CHD) 的青少年进行仔细、个体化的指导。关于他们对疾病相关信息和可获得的过渡技能的偏好的详细数据大多缺乏。我们检查了处于早期过渡阶段的 CHD 青少年的偏好。
对从过渡项目中招募的青少年进行了一项横断面描述性研究。使用了两份评估信息和过渡技能需求的问卷。仅包括在早期过渡阶段完成的问卷。
49 名青少年参与（平均年龄 15.9±1.2 岁，43%为女孩）。59%的人要求了解他们的心脏以及之前和/或未来的手术/干预，45%的人要求了解运动和药物，最多 27%的人要求了解心理社会话题。要求手术信息的女孩多于男孩（76%比 46%；p=0.04）。患有严重复杂 CHD 的青少年比患有中度复杂 CHD 的青少年更常要求了解药物信息（63%比 28%；p=0.02）。年龄较大的青少年不太可能要求手术信息（OR=0.53；95%CI [0.26-0.88]；p=0.03）。多达 83%的青少年认为自己的技能不足，但只有不到 14%的人有兴趣获得技能。结论：青少年主要对医疗话题感兴趣，其次是生活方式信息。随着年龄的增长，他们的信息需求趋于减少。在提供针对 CHD 患者的个性化过渡护理时，及时衡量个人需求并提供信息，理想情况下在青少年早期进行，这似乎很重要。矛盾的是，尽管过渡技能的认知水平较低，但改善这些技能的动力有限。这一悖论需要进一步研究，以更好地调整过渡干预措施。临床试验注册：不适用。
• 向成年生活和护理的过渡需要仔细的患者指导。强烈鼓励采用个性化方法。然而，关于 CHD 青少年对疾病相关信息和过渡技能的偏好的详细信息很少。
• 这项研究表明，处于早期过渡阶段的 CHD 青少年主要需要与医疗相关的信息。他们的信息需求随着年龄的增长而趋于减少，因此需要及时衡量他们的兴趣并提供信息。尽管青少年自我评估的技能水平较低，但他们报告说对获得过渡技能的需求较低。
