Riekert Kristin A, Ford Christine, Goodman Andrea, Eckmann Thomas, Green Angela, Quittner Alexandra L
Johns Hopkins University, School of Medicine, Department of Medicine, Baltimore MD, USA.
Johns Hopkins University, School of Medicine, Department of Medicine, Baltimore MD, USA.
J Cyst Fibros. 2025 Mar;24(2):326-333. doi: 10.1016/j.jcf.2024.10.011. Epub 2024 Oct 31.
The cystic fibrosis (CF) regimen is time-consuming and burdensome leading to barriers to self-management. This mixed-methods study developed the Daily Care Check-in (DCC) that is specific to the barriers faced by people with CF (PWCF) and evaluated its validity.
Qualitative methods were used to identify barriers to self-management and develop items, with "think aloud" cognitive interviews conducted to refine the items. A multisite, cross-sectional study was conducted to test the internal consistency, test-retest reliability, and validity of the DCC scores, comparing them to objective medication adherence (composite medication possession ratio (cMPR)) and psychosocial measures (self-efficacy, medication beliefs, executive functioning, depressive and anxiety symptoms, treatment burden, and treatment complexity).
The DCC (18 items) includes two scales: Occurrence (score range 0-18) and Interference (score range 0-90). 405 participants completed the DCC, 344 (85 %) completed the survey, and 365 (90 %) had a cMPR calculated. On average, 6.8 barriers were reported (SD = 4.2 Occurrence Scale), and the Interference Scale had a mean score of 18.4 (SD = 14.0). Reliability was acceptable to good. cMPR was negatively correlated with the DCC (rho=-0.26, Occurrence and rho = -0.31, Interference, p-values<0.0001). A priori hypotheses between the DCC and the other measures were supported and demonstrated construct validity.
This study provides evidence supporting the validity of the DCC for assessing the presence and impact of barriers to CF self-management, including medication adherence. Formal screening of self-management barriers (e.g., using the DCC) should be considered to facilitate conversations with the care team and identify tailored interventions to support CF self-management.
囊性纤维化（CF）治疗方案耗时且繁琐，导致自我管理存在障碍。这项混合方法研究开发了针对CF患者（PWCF）所面临障碍的每日护理签到（DCC），并评估了其有效性。
采用定性方法识别自我管理的障碍并制定条目，通过“出声思考”认知访谈来完善条目。进行了一项多地点横断面研究，以测试DCC评分的内部一致性、重测信度和效度，并将其与客观的药物依从性（综合药物持有率（cMPR））和心理社会指标（自我效能感、药物信念、执行功能、抑郁和焦虑症状、治疗负担以及治疗复杂性）进行比较。
DCC（18个条目）包括两个量表：发生情况（得分范围0 - 18）和干扰程度（得分范围0 - 90）。405名参与者完成了DCC，344名（85%）完成了调查，365名（90%）计算了cMPR。平均报告了6.8个障碍（发生情况量表标准差 = 4.2），干扰程度量表的平均得分为18.4（标准差 = 14.0）。信度从可接受至良好。cMPR与DCC呈负相关（rho = -0.26，发生情况量表；rho = -0.31，干扰程度量表，p值<0.0001）。DCC与其他指标之间的先验假设得到支持，证明了结构效度。
本研究提供了证据支持DCC在评估CF自我管理障碍（包括药物依从性）的存在及影响方面的有效性。应考虑对自我管理障碍进行正式筛查（例如使用DCC），以促进与护理团队的沟通，并确定支持CF自我管理的针对性干预措施。
