Department of Pediatrics, Luebeck University, Luebeck, Germany.
Department of Medical Psychology, Hannover Medical School, Hannover, Germany.
Health Educ Res. 2019 Feb 1;34(1):50-61. doi: 10.1093/her/cyy045.
For frequent pediatric chronic conditions, especially less common chronic conditions patient education programs are missing. A recently developed modular patient education approach (ModuS) combines disease-specific modules with generic psychosocial topics. ModuS was associated with increased disease-specific knowledge and improvements in families' well-being in children with asthma. In this study we tested if new developed ModuS programs for seven, mostly less common, chronic conditions show comparable program-associated effects. ModuS education programs were offered to the affected child and its parents. Disease-specific knowledge, children's health-related quality of life, life satisfaction and condition-specific burden were measured before, directly following and 6 weeks after participation in the program. The results were compared with families who received a ModuS asthma program. One hundred and sixty-eight children participated. Families were highly satisfied with the programs. Program participation was associated with increased families' knowledge, children`s self-reported health-related quality of life and reduced condition-specific burden. The results were comparable with the results of 230 families who participated in a ModuS asthma program. The ModuS approach allowed the development of patient education programs for children with a variety of chronic conditions. Therefore, ModuS closed an important healthcare gap.
对于常见的儿科慢性疾病，特别是不太常见的慢性疾病，患者教育计划缺失。最近开发的模块化患者教育方法（ModuS）将特定疾病的模块与通用的心理社会主题相结合。ModuS 与哮喘儿童特定疾病知识的增加和家庭幸福感的提高有关。在这项研究中，我们测试了新开发的针对七种、主要是不太常见的慢性疾病的 ModuS 计划是否具有类似的与计划相关的效果。ModuS 教育计划提供给受影响的儿童及其父母。在参与计划之前、直接参与后和 6 周后，测量特定疾病的知识、儿童的健康相关生活质量、生活满意度和特定疾病的负担。将结果与接受 ModuS 哮喘计划的家庭进行比较。共有 168 名儿童参与。家庭对这些项目非常满意。计划参与与家庭知识的增加、儿童自我报告的健康相关生活质量的提高和特定疾病负担的降低有关。结果与 230 名参与 ModuS 哮喘计划的家庭的结果相当。ModuS 方法允许为患有各种慢性疾病的儿童开发患者教育计划。因此，ModuS 弥补了一个重要的医疗保健差距。
