Ravndal Maren, Kelly Benjamin, Ekholm Ola, Andersen Helle, Nielsen Dorte Guldbrand, Idorn Lars, Hjortdal Vibeke
Department of Cardiothoracic Surgery, Copenhagen University Hospital Rigshospitalet, Blegdamsvej 9, 2100, Copenhagen, Denmark.
Department of Cardiothoracic and Vascular Surgery, Aarhus University Hospital, Aarhus, Denmark.
Pediatr Cardiol. 2025 Jan;46(1):148-158. doi: 10.1007/s00246-023-03347-y. Epub 2023 Dec 13.
Knowledge about health-related quality of life (HRQoL) over time in Fontan patients is sparse. We aimed to describe HRQoL over a ten-year period in a population-based Fontan cohort. Further, we compared HRQoL in Fontan patients with the general population. In 2011, Danish Fontan patients were invited to participate in a nationwide study assessing HRQoL. Depending on age, 152 participants filled out either the Pediatric Quality of Life Inventory or the 36-Item Short Form Health Survey. After a decade, patients from the initial study were invited to participate in a follow-up study. All were given the same questionnaire as in the first study, plus the 12-Item Short Form Health Survey (SF-12) as part of the Danish National Health Survey. HRQoL over time was described, and SF-12 scores were compared with the general population. A total of 109 Fontan patients completed the questionnaires in both studies. The mean patient age was 14.9 ± 6.6 years and 25.6 ± 6.5 years respectively. Despite an increase in complications, HRQoL did not decrease during the study period. Physical HRQoL scores were lower than mental HRQoL scores at both time points. The SF-12 physical component score was significantly lower in Fontan patients than in the general population (median score 52 vs. 56, p < 0.001), while the SF-12 mental component score was comparable (median score 51 vs. 50, p = 0.019). HRQoL remained stable over a ten-year period in a contemporary Danish Fontan cohort. Still, the physical HRQoL remained significantly lower than that of the general population.
关于Fontan手术患者随时间推移的健康相关生活质量（HRQoL）的知识较为匮乏。我们旨在描述基于人群的Fontan队列在十年期间的HRQoL。此外，我们将Fontan手术患者的HRQoL与一般人群进行了比较。2011年，丹麦的Fontan手术患者受邀参加一项评估HRQoL的全国性研究。根据年龄，152名参与者填写了儿童生活质量量表或36项简短健康调查问卷。十年后，最初研究中的患者受邀参加一项随访研究。所有人都收到了与第一项研究相同的问卷，外加作为丹麦国家健康调查一部分的12项简短健康调查问卷（SF-12）。描述了随时间推移的HRQoL，并将SF-12得分与一般人群进行了比较。共有109名Fontan手术患者在两项研究中都完成了问卷。患者的平均年龄分别为14.9±6.6岁和25.6±6.5岁。尽管并发症有所增加，但在研究期间HRQoL并未下降。在两个时间点，身体HRQoL得分均低于心理HRQoL得分。Fontan手术患者的SF-12身体成分得分显著低于一般人群（中位数得分52对56，p<0.001），而SF-12心理成分得分相当（中位数得分51对50，p=0.019）。在当代丹麦Fontan队列中，HRQoL在十年期间保持稳定。不过，身体HRQoL仍显著低于一般人群。
