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患有复杂疾病的青少年的过渡准备情况及医疗保健满意度。

Readiness for transition and health-care satisfaction in adolescents with complex medical conditions.

作者信息

Haarbauer-Krupa Juliet, Alexander Nneka Morris, Mee Laura, Johnson Alcuin, Wise Justin, Arora Gupta Nitika, Schechter Michael S, Wasilewski-Masker Karen, Gilleland Marchak Jordan

机构信息

Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia.

Department of Neuropsychology, Children's Healthcare of Atlanta, Atlanta, Georgia.

出版信息

Child Care Health Dev. 2019 May;45(3):463-471. doi: 10.1111/cch.12656.

Abstract

BACKGROUND

The purpose of this study is to examine contributions to patient perceptions of transition readiness and satisfaction with care amongst adolescents and young adults (AYAs) with complex health conditions engaging in paediatric care.

METHODS

Participants included 94 patients aged 14-20 years (M = 16.41, SD = 1.56) with cystic fibrosis (n = 31), sickle cell disease (n = 27), and solid organ transplants (n = 36). Participants completed self-report questionnaires and medical providers completed measures of their medication regimen complexity. One-way analysis of variance compared differences between disease groups on study variables. Pearson product-moment correlation coefficients and linear regression models evaluated factors associated with AYA reported transition readiness and satisfaction with health care.

RESULTS

There were no significant differences between disease groups on patient-reported transition readiness, barriers to medication adherence, health care self-management, or satisfaction. Patient age, self-reported health-care responsibility, medication barriers, and academic performance predicted a large portion of the variance in AYA perceptions of transition readiness (R  = 0.27, F (4, 83) = 7.74, p < 0.001, Cohen's f2 = 0.37). Patient gender, self-reported health-care responsibility, and medication barriers predicted a medium portion of the variance in AYA satisfaction with health care (R  = 0.23, F (3, 88) = 8.56, p < 0.001, Cohen's f2 = 0.30).

CONCLUSIONS

Patient perceptions of health care self-management and barriers to medication adherence are important predictors of readiness for transition and satisfaction with care. Considering a holistic approach that includes these factors allows for improved understanding of individual needs for transition interventions that can improve adult outcomes for individuals with complex health conditions.

摘要

背景

本研究旨在探讨患有复杂健康状况的青少年和青年(AYA)在接受儿科护理时,对过渡准备情况和护理满意度的看法的影响因素。

方法

参与者包括94名年龄在14 - 20岁(M = 16.41,标准差 = 1.56)的患者,其中患有囊性纤维化的有31人,镰状细胞病的有27人,实体器官移植的有36人。参与者完成了自我报告问卷,医疗服务提供者完成了对其药物治疗方案复杂性的测量。单因素方差分析比较了疾病组在研究变量上的差异。Pearson积差相关系数和线性回归模型评估了与AYA报告的过渡准备情况和医疗保健满意度相关的因素。

结果

在患者报告的过渡准备情况、药物依从性障碍、医疗自我管理或满意度方面,疾病组之间没有显著差异。患者年龄、自我报告的医疗保健责任、药物障碍和学业成绩预测了AYA对过渡准备情况看法的很大一部分方差(R = 0.27,F(4, 83) = 7.74,p < 0.001,Cohen's f2 = 0.37)。患者性别、自我报告的医疗保健责任和药物障碍预测了AYA对医疗保健满意度的中等部分方差(R = 0.23,F(3, 88) = 8.56,p < 0.001,Cohen's f2 = 0.30)。

结论

患者对医疗自我管理的看法和药物依从性障碍是过渡准备情况和护理满意度的重要预测因素。考虑包括这些因素的整体方法有助于更好地理解个体对过渡干预的需求,从而改善患有复杂健康状况个体的成人结局。

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