Copenhagen Phase IV Unit, Department of Clinical Pharmacology and Center for Clinical Research and Prevention, University Hospital of Copenhagen - Bispebjerg and Frederiksberg, DK, Denmark.
Copenhagen Phase IV Unit, Department of Clinical Pharmacology and Center for Clinical Research and Prevention, University Hospital of Copenhagen - Bispebjerg and Frederiksberg, DK, Denmark.
J Cyst Fibros. 2024 Sep;23(5):836-841. doi: 10.1016/j.jcf.2024.03.009. Epub 2024 Mar 14.
Past and ongoing advancements in cystic fibrosis (CF) care warrant long-term analysis of the societal impact of the condition. This study aims to evaluate changes in key socioeconomic factors across three decades among people living with CF (pwCF), compared with both the general population and an early-onset chronic disease population.
This nationwide, registry-based, matched cohort study included all pwCF ≥ 18 years in Denmark in the years 1990, 2000, 2010, and 2018. Each person living with CF was matched to five individuals in the general population and five individuals living with type 1 diabetes or juvenile arthritis based on age, sex, and municipality.
The Danish adult CF population increased nearly fourfold from 88 in 1990 to 331 in 2018, and mean age increased by ten years. The educational level of pwCF was similar to the two comparator cohorts, while pwCF were less often in employment and more often permanently outside the labor force. Personal and household income levels of the CF cohort were higher than those of the comparator cohorts.
The disadvantage in employment for pwCF remained, but, over time, the societal profiles of the one-year CF cohorts increasingly converged with those of the comparator cohorts, indicative of improved clinical management, extended life expectancy, and the supportive role of the Danish welfare system in reducing health inequalities. Further research should be done to evaluate the effects of the newly introduced modulator therapies on employment, considering the broader societal impact and impact on quality of life.
囊性纤维化（CF）护理的过去和正在取得的进展需要对该疾病的社会影响进行长期分析。本研究旨在评估与普通人群和早发性慢性疾病人群相比，CF 患者（pwCF）中关键社会经济因素在过去三十年中的变化。
这是一项全国范围内基于登记的匹配队列研究，纳入了丹麦 1990 年、2000 年、2010 年和 2018 年≥18 岁的所有 pwCF。每一位 CF 患者都与普通人群中的五个人和患有 1 型糖尿病或幼年特发性关节炎的人群中的五个人相匹配，匹配的因素包括年龄、性别和市。
丹麦成人 CF 患者人数从 1990 年的 88 人增加到 2018 年的 331 人，几乎增加了四倍，平均年龄增加了十岁。pwCF 的教育水平与两个对照组相似，而 pwCF 的就业率较低，长期处于非劳动力状态的比例较高。CF 队列的个人和家庭收入水平高于对照组。
pwCF 的就业劣势仍然存在，但随着时间的推移，每年 CF 队列的社会特征与对照组越来越趋同，表明临床管理得到了改善，预期寿命延长，丹麦福利制度在减少健康不平等方面发挥了支持作用。应进一步研究新引入的调节剂治疗对就业的影响，考虑到更广泛的社会影响和对生活质量的影响。
