Center for Adherence and Self-Management, OH, United States of America; Cincinnati Children's Hospital Medical Center, OH, United States of America; University of Cincinnati College of Medicine, OH, United States of America.
Nationwide Children's Hospital, OH, United States of America; Ohio State University, OH, United States of America.
J Pediatr Nurs. 2019 Jul-Aug;47:18-22. doi: 10.1016/j.pedn.2019.04.011. Epub 2019 Apr 18.
The purpose of this study was to examine patterns of adherence to a novel dietary supplement in pediatric cystic fibrosis. Adherence to dietary supplementation in cystic fibrosis is challenging, and examination of patterns of adherence behavior over time is needed to better characterize subgroups of patients who need self-management support.
We prospectively examined adherence to Lym-X-Sorb™ (LXS), an organized lipid matrix dietary supplementation for patients with cystic fibrosis (CF) and pancreatic insufficiency (PI), over a 12-month period. Adherence for participants aged 5-17 years with CF and PI (N = 109) was monitored monthly via supplement packet counts. Group-based trajectory modeling was employed to examine patterns in adherence behavior over time.
Four distinct trajectories best characterized adherence in this sample, with 18% of participants demonstrating near perfect adherence, 42% demonstrating good adherence (at or above 80%), 16% demonstrating poor adherence that declined over time, and 24% demonstrating significant non-adherence (< 30%).
Some patients with CF and PI who are prescribed nutritional supplements will require intensive, individualized behavioral intervention to enhance adherence. Identifying patients who will have difficulty adhering to dietary interventions may result in better treatment-to-patient matching and improved adherence promotion efforts.
Assessment of adherence to dietary supplementation over time can identify patients at risk for continued difficulty with self-management and provide opportunities for early intervention.
本研究旨在探讨小儿囊性纤维化患者对新型膳食补充剂的依从模式。囊性纤维化患者对膳食补充剂的依从性具有挑战性,需要对依从行为的模式进行随时间的考察,以便更好地描述需要自我管理支持的患者亚组。
我们前瞻性地研究了 109 例囊性纤维化伴胰腺功能不全(PI)患者对 Lym-X-Sorb(LXS)的依从性,LXS 是一种组织化脂质基质膳食补充剂。对年龄在 5-17 岁的参与者,每月通过补充包计数监测其依从性。采用基于群组的轨迹模型来考察随时间的依从行为模式。
在该样本中,四种不同的轨迹最好地描述了依从性,18%的参与者表现出近乎完美的依从性,42%表现出良好的依从性(80%或以上),16%表现出依从性差且随时间下降,24%表现出显著的不依从性(<30%)。
一些接受营养补充剂处方的囊性纤维化伴 PI 患者可能需要强化的个体化行为干预来提高依从性。识别出难以坚持饮食干预的患者可能会导致更好的治疗与患者匹配,并改善依从性促进措施。
随时间评估膳食补充剂的依从性可以识别出持续存在自我管理困难风险的患者,并提供早期干预的机会。