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探讨儿科心脏移植后成年早期的发展任务:一项横断面病例对照研究。

Exploring the developmental tasks of emerging adults after paediatric heart transplantation: a cross-sectional case control study.

机构信息

Unit for Psychosomatic Medicine, Department of Cardiothoracic and Vascular Surgery, German Heart Center Berlin, Berlin, Germany.

Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.

出版信息

BMJ Open. 2018 Nov 25;8(11):e022461. doi: 10.1136/bmjopen-2018-022461.

Abstract

OBJECTIVE

Paediatric heart transplantation (PHTX) comprises 12% of all cardiac transplants and many of the children now survive into adulthood. Only a few studies have investigated the long-term psychosocial well-being of young adult patients after PHTX; no studies have investigated developmental tasks of emerging adulthood in different domains (family, social environment, education and profession, partnership, social environment).

SETTING

Specialised heart centre in Germany.

PARTICIPANTS

Thirty-eight young adults aged 22.11 years (SD=4.7) who underwent PHTX and a control group of 46 participants with no known chronic diseases, aged 22.91 years (SD=1.8), participated in the study.

OUTCOME MEASURES

All participants completed the following questionnaires: sociodemographic, the F-SozU, to measure perceived social support, the Gießener Beschwerde-Bogen to measure subjective complaints experienced by patients, the KIDSCREEN-27 to measure well-being and the SF-36 to measure health-related quality of life (QoL).

RESULTS

'Family': the quality of the relationship with the parents was found to be equal in both groups, while PHTX patients stayed in closer spatial proximity to their parents. 'Social environment': PHTX patients reported lower social support by peers than the control group. 'Education and profession': PHTX patients most often worked full-time (23%), had no job and/or received a pension (21%). In comparison, most of the healthy controls did an apprenticeship (40%) and/or worked part time (32%). 'Partnership': fewer of the PHTX patients had a partner than the control group while relationship duration did not differ. In exploratory regression analyses, social support by peers predicted physical QoL, whereas physical complaints and the physical role predicted mental QoL in PHTX patients.

CONCLUSIONS

Our exploratory findings highlight important similarities and differences in specific developmental tasks between PHTX patients and healthy controls. Future studies should focus on developmental tasks of PHTX patients in this age group more systematically, investigating their role in physical and mental well-being in a confirmatory manner.

摘要

目的

儿科心脏移植(PHTX)占所有心脏移植的 12%,现在许多儿童已经存活到成年。只有少数研究调查了 PHTX 后年轻成年患者的长期社会心理健康状况;没有研究调查不同领域(家庭、社会环境、教育和职业、伴侣关系、社会环境)的成年早期发展任务。

地点

德国专门的心脏中心。

参与者

38 名年龄为 22.11 岁(SD=4.7)的年轻成年人接受了 PHTX,对照组为 46 名年龄为 22.91 岁(SD=1.8)、无已知慢性疾病的参与者,参加了这项研究。

结果测量

所有参与者完成了以下问卷:社会人口统计学,F-SozU,以衡量感知社会支持,Gießener Beschwerde-Bogen,以衡量患者的主观抱怨,KIDSCREEN-27,以衡量幸福感,SF-36,以衡量健康相关生活质量(QoL)。

结果

“家庭”:发现两组患者与父母的关系质量相同,而 PHTX 患者与父母的空间距离更近。“社会环境”:PHTX 患者报告的同龄人社会支持低于对照组。“教育和职业”:PHTX 患者最常全职工作(23%),没有工作和/或领取养老金(21%)。相比之下,大多数健康对照组做学徒(40%)和/或兼职工作(32%)。“伴侣关系”:PHTX 患者的伴侣人数少于对照组,而关系持续时间没有差异。在探索性回归分析中,同龄人社会支持预测身体 QoL,而身体抱怨和身体角色预测 PHTX 患者的心理 QoL。

结论

我们的探索性发现强调了 PHTX 患者和健康对照组在特定发展任务上的重要相似性和差异。未来的研究应该更系统地关注该年龄段 PHTX 患者的发展任务,以验证的方式调查他们在身体和心理健康方面的作用。

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