Bregnballe Vibeke, Schiøtz Peter Oluf, Boisen Kirsten A, Pressler Tacjana, Thastum Mikael
Department of Paediatrics, Aarhus University Hospital, Aarhus, Denmark.
Patient Prefer Adherence. 2011;5:507-15. doi: 10.2147/PPA.S25308. Epub 2011 Oct 11.
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.
A questionnaire survey of a cohort of young Danish patients with cystic fibrosis aged 14-25 years and their parents was undertaken.
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.
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.
治疗依从性对于囊性纤维化患者至关重要，但依从性差是个问题，尤其是在青春期。识别治疗依从性的障碍以及更好地理解环境如何塑造这些障碍在该疾病中非常重要。已有研究探讨了青少年对依从性障碍的报告，但尚未对其父母在此类障碍方面的经历进行研究。本研究的目的是探索囊性纤维化年轻患者及其父母所识别出的治疗依从性障碍。
对一组年龄在14 - 25岁的丹麦囊性纤维化年轻患者及其父母进行了问卷调查。
60%的患者及其62%的父母报告了治疗依从性障碍。患者和父母一致认为，最常见的三个障碍是时间不足、健忘以及不愿在公共场合服药。我们发现报告的障碍数量与感知到的治疗负担之间存在显著正相关。我们还发现报告的障碍数量与治疗依从性之间存在统计学上的显著关系。障碍数量与青少年/年轻人及其父母的反应之间，以及障碍数量与家庭关于囊性纤维化的沟通方式之间存在显著关联。
本研究表明，大多数囊性纤维化青少年及其父母经历了治疗依从性障碍。青少年与其父母在障碍的程度和类型上达成的共识表明，青少年、其父母和医疗保健专业人员在克服青少年依从性问题方面有密切合作的机会。
