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J Clin Med. 2022 Mar 27;11(7):1857. doi: 10.3390/jcm11071857.
3
Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus.一种创新的依从性干预措施在儿童期起病的系统性红斑狼疮青少年中的可行性和可接受性。
Pediatr Rheumatol Online J. 2020 Apr 26;18(1):36. doi: 10.1186/s12969-020-00430-z.
4
Feasibility and acceptability of a pilot tailored text messaging intervention for adolescents and young adults completing cancer treatment.针对完成癌症治疗的青少年和年轻成年人的定制短信干预措施的可行性和可接受性的试点研究。
Psychooncology. 2020 Jan;29(1):164-172. doi: 10.1002/pon.5287. Epub 2019 Dec 8.
5
Self-management and adherence in childhood-onset systemic lupus erythematosus: what are we missing?儿童起病系统性红斑狼疮的自我管理和依从性:我们遗漏了什么?
Lupus. 2019 Apr;28(5):642-650. doi: 10.1177/0961203319839478. Epub 2019 Mar 24.
6
Methods to improve medication adherence in patients with chronic inflammatory rheumatic diseases: a systematic literature review.改善慢性炎症性风湿性疾病患者药物依从性的方法:一项系统文献综述
RMD Open. 2018 Jul 27;4(2):e000684. doi: 10.1136/rmdopen-2018-000684. eCollection 2018.
7
Brief Report: Lupus-An Unrecognized Leading Cause of Death in Young Females: A Population-Based Study Using Nationwide Death Certificates, 2000-2015.简要报告:狼疮——年轻女性中未被识别的主要死因:2000-2015 年基于全国死亡证明的人群研究。
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8
Adherence barriers in pediatric epilepsy: From toddlers to young adults.小儿癫痫的依从性障碍:从幼儿到青年
Epilepsy Behav. 2018 Mar;80:229-234. doi: 10.1016/j.yebeh.2018.01.031. Epub 2018 Feb 9.
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Use of SLICC criteria in a large, diverse lupus registry enables SLE classification of a subset of ACR-designated subjects with incomplete lupus.在一个大型、多样化的狼疮登记处使用SLICC标准,能够对一部分美国风湿病学会(ACR)指定的狼疮不完整患者进行系统性红斑狼疮(SLE)分类。
Lupus Sci Med. 2017 Mar 17;4(1):e000176. doi: 10.1136/lupus-2016-000176. eCollection 2017.
10
Differences in Clinical Features and Mortality between Childhood-onset and Adult-onset Systemic Lupus Erythematosus: A Prospective Single-center Study.儿童期起病与成人期起病的系统性红斑狼疮临床特征及死亡率的差异:一项前瞻性单中心研究
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一种嵌入REDCap且符合HIPAA标准的短信应用程序用于追踪狼疮青少年药物依从性的可行性和可接受性

Feasibility and Acceptability of a REDCap-Embedded HIPAA-Compliant Text Messaging Application to Track Medication Adherence in Adolescents With Lupus.

作者信息

Harry Onengiya, Richard Brittany, Taxter Alysha, Skelton Joseph

机构信息

From the Section of Pediatric Rheumatology, Wake Forest Baptist Brenner Children's Hospital, Winston-Salem, NC.

Division of Rheumatology, Nationwide Children's Hospital, Columbus, OH.

出版信息

J Clin Rheumatol. 2024 Dec 1;30(8):332-335. doi: 10.1097/RHU.0000000000002142. Epub 2024 Oct 1.

DOI:10.1097/RHU.0000000000002142
PMID:39352307
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11747896/
Abstract

BACKGROUND/OBJECTIVE: Despite advances in clinical care and treatment options, adolescents with lupus continue to experience adverse health outcomes. Poor adherence to medication regimens is a major contributor to these negative outcomes. The utility of short message service (SMS) in tracking barriers to adherence prospectively remains untested for adolescents with lupus. Our objectives were (1) feasibility of incorporating a Health Insurance Portability and Accountability Act (HIPAA)-compliant SMS text messaging application into REDCap and (2) acceptability of using SMS text messaging to track barriers to medication adherence in adolescents with lupus.

METHODS

This study is a 12-week pilot cohort study of adolescents with SLE per the 1997 revised American College of Rheumatology. A REDCap-embedded HIPAA-compliant text messaging application was used to send biweekly messages with survey link to track medication adherence. Measures were completed. Descriptive statistics were used to summarize demographics, medical, and acceptability data. Response to text messages and survey completion rates were reported as a measure of feasibility.

RESULTS

Most eligible adolescents approached agreed to participate (n = 17, 71% enrollment rate). The cellphone ownership rate among adolescents eligible for participation was 92%. Nine subjects responded to all text messages sent (53% response and completion rate). Eleven subjects (65%) responded to two thirds of the text messages. Overall, 77% of enrolled subjects completed at least half of the surveys sent. Reminders to complete surveys were sent to 30% of enrolled adolescents.

CONCLUSIONS

This study shows that embedding a HIPAA-compliant SMS text message application in REDCap is feasible and can be used to engage adolescents with chronic conditions in monitoring between clinic visits.

摘要

背景/目的:尽管临床护理和治疗方案有所进步,但狼疮青少年患者仍面临不良健康后果。药物治疗方案依从性差是导致这些负面后果的主要因素。对于狼疮青少年患者,短消息服务(SMS)在追踪依从性障碍方面的前瞻性效用尚未得到检验。我们的目标是:(1)将符合《健康保险流通与责任法案》(HIPAA)的短信应用程序纳入REDCap的可行性;(2)使用短信追踪狼疮青少年患者药物治疗依从性障碍的可接受性。

方法

本研究是一项针对符合1997年美国风湿病学会修订标准的系统性红斑狼疮青少年患者的为期12周的试点队列研究。使用嵌入REDCap的符合HIPAA的短信应用程序,每两周发送带有调查链接的消息以追踪药物治疗依从性。完成各项测量。使用描述性统计来总结人口统计学、医学和可接受性数据。报告对短信的回复和调查完成率作为可行性的衡量指标。

结果

大多数被邀请的符合条件的青少年同意参与(n = 17,参与率71%)。有资格参与的青少年中手机拥有率为92%。9名受试者回复了所有发送的短信(回复及完成率53%)。11名受试者(65%)回复了三分之二的短信。总体而言,77%的登记受试者完成了至少一半发送的调查。向30%的登记青少年发送了完成调查的提醒。

结论

本研究表明,在REDCap中嵌入符合HIPAA的短信应用程序是可行的,可用于让患有慢性病的青少年在门诊就诊期间进行自我监测。