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本文引用的文献

1
Delivering a New Future for People With Cystic Fibrosis.为囊性纤维化患者带来新的未来。
Pediatrics. 2023 Oct 1;152(4). doi: 10.1542/peds.2023-062985.
2
Effect of Trikafta on bone density, body composition and exercise capacity in CF: A pilot study.Trikafta 对 CF 患者骨密度、身体成分和运动能力的影响:一项初步研究。
Pediatr Pulmonol. 2023 Feb;58(2):577-584. doi: 10.1002/ppul.26243. Epub 2022 Nov 22.
3
Updates in Nutrition Management of Cystic Fibrosis in the Highly Effective Modulator Era.高效调节剂时代囊性纤维化的营养管理更新。
Clin Chest Med. 2022 Dec;43(4):727-742. doi: 10.1016/j.ccm.2022.06.012.
4
Youth physical activity and the COVID-19 pandemic: A systematic review.青少年身体活动与新冠疫情:一项系统综述。
Prev Med Rep. 2022 Oct;29:101959. doi: 10.1016/j.pmedr.2022.101959. Epub 2022 Aug 22.
5
Pancreatic Enzyme Replacement Therapy in Cystic Fibrosis.囊性纤维化的胰腺酶替代治疗。
Nutrients. 2022 Mar 23;14(7):1341. doi: 10.3390/nu14071341.
6
Overweight and cystic fibrosis: An unexpected challenge.超重与囊性纤维化:一项意想不到的挑战。
Pediatr Pulmonol. 2022 Feb;57 Suppl 1:S40-S49. doi: 10.1002/ppul.25748. Epub 2021 Nov 12.
7
Adolescent Peer Influence on Eating Behaviors via Social Media: Scoping Review.青少年社交媒体中的同伴影响对饮食行为的影响:范围综述。
J Med Internet Res. 2021 Jun 3;23(6):e19697. doi: 10.2196/19697.
8
The developmental trajectories of executive function from adolescence to old age.执行功能从青少年到老年的发展轨迹。
Sci Rep. 2021 Jan 14;11(1):1382. doi: 10.1038/s41598-020-80866-1.
9
The Impact of COVID-19 on Pediatric Adherence and Self-Management.COVID-19 对儿科患者服药依从性和自我管理的影响。
J Pediatr Psychol. 2020 Oct 1;45(9):977-982. doi: 10.1093/jpepsy/jsaa079.
10
Executive functioning in pediatric cystic fibrosis: A preliminary study and conceptual model.儿童囊性纤维化中的执行功能:一项初步研究和概念模型。
Pediatr Pulmonol. 2020 Apr;55(4):939-947. doi: 10.1002/ppul.24648. Epub 2020 Jan 17.

赋予囊性纤维化青少年发言权:从他们的决策参与度预测囊性纤维化的营养依从性。

Giving adolescents with cystic fibrosis a voice: Predicting cystic fibrosis nutritional adherence from their decision-making involvement.

机构信息

Department of Psychology, West Virginia University, Morgantown, WV, United States.

Department of Clinical & Health Psychology, University of Florida, Gainesville, FL, United States.

出版信息

J Pediatr Psychol. 2024 Jul 1;49(7):491-500. doi: 10.1093/jpepsy/jsae034.

DOI:10.1093/jpepsy/jsae034
PMID:38752579
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11258803/
Abstract

OBJECTIVE

Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF.

METHODS

37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence.

RESULTS

43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (β = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant.

CONCLUSIONS

When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.

摘要

目的

囊性纤维化(awCF)青少年的营养依从性差与肺功能下降有关。awCF 在饮食决策方面往往比年幼的孩子更独立,但很少有研究探讨青少年的决策如何与营养依从性相关。本研究探讨了青少年决策参与的各个方面是否有助于 awCF 的酶和热量依从性。

方法

37 个家庭参与并完成了研究程序。awCF 和照顾者完成了电子调查,包括决策参与度量表(DMIS)。DMIS 使用 DMIS 子量表评估 awCF 在与照顾者进行营养相关决策/讨论时的行为:儿童寻求(向照顾者寻求帮助/建议)、儿童表达(awCF 表达意见)和共同/选项(awCF 参与共同决策或照顾者提供选项)。awCF 通过视频会议/电话完成了 2 次 24 小时饮食回忆,以估计依从性。病历回顾收集了医疗信息。将 DMIS 子量表回归到酶和热量依从性上。

结果

43%的 awCF 达到了热量推荐量;48.6%的人按照规定服用了所有的酶。热量依从性与青少年和父母报告的儿童寻求(r=0.53;r=0.36)和青少年报告的共同/选项(r=0.41)呈正相关。根据青少年的报告,热量依从性回归模型具有统计学意义,儿童寻求对热量依从性有独特的贡献(β=0.62,p=0.03)。父母报告的青少年决策参与显著预测了热量依从性,但没有一个子量表对热量依从性有独特的贡献。其他回归均无统计学意义。

结论

当 awCF 与照顾者进行营养相关讨论时,特别是提出问题时,热量依从性会更好。未来的研究应该检查家庭因素是否会影响这些结果。鼓励 awCF 在营养讨论中提出问题。