促使1型神经纤维瘤病成人患者持续使用“我能应对”移动应用程序(iCanCope-NF)。
Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF).
作者信息
Buono Frank D, Larkin Kaitlyn, Pham Quynh, De Sousa Diane, Zempsky William T, Lalloo Chitra, Stinson Jennifer N
机构信息
Department of Psychiatry, Yale School of Medicine, New Haven, CT 06510, USA.
Centre for Digital Therapeutics, University Health Network, Toronto, ON M5G 2C4, Canada.
出版信息
Cancers (Basel). 2023 Jun 16;15(12):3213. doi: 10.3390/cancers15123213.
INTRODUCTION
Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic condition in which chronic pain is a predominant issue. Given the rarity of the disease, there are limited psychosocial treatments for individuals with NF1 suffering with chronic pain. Using mobile applications can facilitate psychosocial treatments; however, there are consistent issues with engagement. Utilizing a mixed methodology, the current study evaluated the customized iCanCope mobile application for NF1 on increasing engagement through the usage of contingency management.
METHODS
A mixed methods study from a subset of data coming from a randomized clinical trial that occurred from January 2021 to August 2022 was undertaken. Two groups (iCC and iCC + CM) were exposed to the customized iCanCope mobile application in which engagement data were captured in real-time with daily check-ins for interference, sleep, mood, physical activity, energy levels, goal setting, and accessing article content (coping strategies). Additionally, semi-structured interviews were conducted to gain insight into the participants' experience at the end of the trial.
RESULTS
Adults (N = 72) were recruited via NF patient advocacy groups. Significant differences were noted between the groups in total articles read ( = 0.002), goals achieved ( = 0.017), and goals created ( = 008). Additionally, there were significant differences observed between user-generated goals and those that were app recommended ( < 0.001). Both groups qualitatively reported positive feedback on the customized mobile application, indicating that continued usage and engagement of the mobile application were acceptable.
CONCLUSIONS
Employing customized mobile applications for adults with NF1 along with contingency management can leverage self-managed pain treatments while providing auxiliary resources to this population.
引言
1型神经纤维瘤病(NF1)是一种常染色体显性遗传病,慢性疼痛是其主要问题。鉴于该疾病的罕见性,针对患有慢性疼痛的NF1患者的社会心理治疗方法有限。使用移动应用程序可以促进社会心理治疗;然而,在参与度方面存在一些常见问题。本研究采用混合方法,评估了针对NF1的定制iCanCope移动应用程序通过使用权变管理来提高参与度的效果。
方法
本研究采用混合方法,数据子集来自于2021年1月至2022年8月进行的一项随机临床试验。两组(iCC组和iCC + CM组)使用定制的iCanCope移动应用程序,通过每日签到实时收集参与度数据,内容包括干扰、睡眠、情绪、身体活动、能量水平、目标设定以及获取文章内容(应对策略)。此外,在试验结束时进行了半结构化访谈,以深入了解参与者的体验。
结果
通过NF患者倡导组织招募了72名成年人。两组在阅读的文章总数( = 0.002)、实现的目标( = 0.017)和设定的目标( = 0.008)方面存在显著差异。此外,用户设定的目标与应用程序推荐的目标之间也存在显著差异( < 0.001)。两组均定性报告了对定制移动应用程序的积极反馈,表明该移动应用程序的持续使用和参与度是可以接受的。
结论
为患有NF1的成年人使用定制移动应用程序并结合权变管理,可以利用自我管理的疼痛治疗方法,同时为这一人群提供辅助资源。