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Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents

机译：青少年和成年囊性纤维化患者的依从性障碍：针对年轻患者及其父母的问卷调查

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Background: Treatment adherence is crucial in patients with cystic fibrosis, but poor adherence is a problem, especially during adolescence. Identification of barriers to treatment adherence and a better understanding of how context shapes barriers is of great importance in the disease. Adolescent reports of barriers to adherence have been studied, but studies of their parents' experience of such barriers have not yet been carried out. The aim of the present study was to explore barriers to treatment adherence identified by young patients with cystic fibrosis and by their parents. Methods: A questionnaire survey of a cohort of young Danish patients with cystic fibrosis aged 14–25 years and their parents was undertaken. Results: Barriers to treatment adherence were reported by 60% of the patients and by 62% of their parents. Patients and parents agreed that the three most common barriers encountered were lack of time, forgetfulness, and unwillingness to take medication in public. We found a significant positive correlation between reported number of barriers and perceived treatment burden. We also found a statistically significant relationship between the reported number of barriers and treatment adherence. A significant association was found between the number of barriers and the reactions of adolescents/young adults and those of their mothers and fathers, and between the number of barriers and the way the family communicated about cystic fibrosis. Conclusion: The present study showed that the majority of adolescents with cystic fibrosis and their parents experienced barriers to treatment adherence. Agreement between adolescents and their parents regarding the level and types of barriers indicates an opportunity for close cooperation between adolescents, their parents, and health care professionals in overcoming adolescent adherence problems.
机译：背景：依从性对于囊性纤维化患者至关重要，但是依从性差是一个问题，尤其是在青春期。识别治疗依从性障碍以及更好地了解环境如何形成障碍对疾病至关重要。青少年对依从性障碍的报道已有研究，但尚未对其父母对此类障碍的经历进行研究。本研究的目的是探索由年轻的囊性纤维化患者及其父母确定的依从性治疗的障碍。方法：对一组丹麦年轻人（年龄在14至25岁之间）的囊性纤维化患者及其父母进行了问卷调查。结果：60％的患者和62％的父母报告了依从性治疗的障碍。患者和父母一致认为，遇到的三个最常见的障碍是时间不足，健忘和不愿在公共场合服药。我们发现报告的障碍数与感知的治疗负担之间存在显着的正相关。我们还发现报告的障碍数与治疗依从性之间存在统计学上的显着关系。发现障碍的数量与青少年/年轻人及其父母的反应以及障碍的数量与家庭关于囊性纤维化的沟通方式之间存在显着关联。结论：本研究表明大多数患有囊性纤维化的青少年及其父母经历了依从性治疗的障碍。青少年和父母之间就障碍的程度和类型达成协议，这为青少年，父母和医疗保健专业人员之间在克服青少年依从性问题方面的密切合作提供了机会。

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