Quittner Alexandra L, Saez-Flores Estefany, Barton John D
Department of Psychology, University of Miami, Coral Gables, Florida, USA.
Curr Opin Pulm Med. 2016 Mar;22(2):187-91. doi: 10.1097/MCP.0000000000000244.
Cystic fibrosis (CF) is the most common genetic, life-shortening illness among white populations. Management of the disease requires a complex, time-consuming treatment regimen. The purpose of this review is to highlight current research examining the psychological burden of CF, including psychological distress, social challenges, treatment burden, and adherence to daily treatments.
Individuals with CF and their parent caregivers report elevated symptoms of depression and anxiety. Recent international guidelines (Cystic Fibrosis Foundation and European Cystic Fibrosis Society) recommend annual screening of these symptoms using the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scales. Symptoms of depression have been associated with decreased adherence, lower quality of life, and higher healthcare costs. Adherence to pulmonary medications has been found to be 50% or less and decreases with age. Poor adherence has been associated with higher healthcare costs, more frequent hospitalizations, and worse quality of life.
Individuals with CF face unique challenges that can lead to psychological burden. Screening for these symptoms and developing effective interventions to improve adherence are the key targets for the next 5 years of research.
囊性纤维化(CF)是白种人群中最常见的遗传性、缩短寿命的疾病。该疾病的管理需要复杂且耗时的治疗方案。本综述的目的是强调当前关于CF心理负担的研究,包括心理困扰、社会挑战、治疗负担以及对日常治疗的依从性。
CF患者及其父母照顾者报告称抑郁和焦虑症状有所增加。最近的国际指南(囊性纤维化基金会和欧洲囊性纤维化协会)建议使用患者健康问卷-9(PHQ-9)和广泛性焦虑障碍-7(GAD-7)量表对这些症状进行年度筛查。抑郁症状与依从性降低、生活质量下降以及医疗费用增加有关。研究发现,肺部药物的依从性为50%或更低,且随年龄增长而降低。依从性差与更高的医疗费用、更频繁的住院以及更差的生活质量有关。
CF患者面临着可能导致心理负担的独特挑战。筛查这些症状并制定有效的干预措施以提高依从性是未来5年研究的关键目标。