Improving Oral Health and Quality of Life After Oral Cancer: A Web-based Approach

描述(申请人提供)：口腔癌幸存者会有持续的后遗症，包括与他们的疾病和治疗相关的异常唾液减少或吞咽困难。为了将随后的癌症风险降至最低，并减少这些后遗症，建议幸存者遵循以家庭为基础的强化口腔护理方案，吞咽康复方案，并改变健康的生活方式。然而，坚持性很差。虽然家庭照顾者可以支持坚持，但他们往往没有为自己的照看角色做好准备，在口腔护理和康复方面存在显著的知识差距。积极让幸存者和他们的照顾者参与的行为干预可能被证明在改善这一人群的口腔健康和生活质量方面有效。该项目旨在建立一种称为计算机辅助口腔健康康复和支持(CARE)的交互式、基于网络的多媒体干预的可行性。干预以自我决定理论(SDT)为基础，关注个体在发展自主性(选择感和意志感)、能力(自我效能感)和关联感(归属感和与相似他人的联系)方面的需求。CARE试图提供：1)专家信息和个性化的行为自我评估，以提高遵守的动机；2)技能建设练习，以增强行为自我管理的能力；3)通过短信和电子邮件发送提醒，以提高遵从性；4)为照顾者提供激励支持的策略；以及，5)留言板，以促进联系和支持。干预内容将由多学科研究团队制定，并通过外部咨询委员会和对18名口腔癌幸存者/照顾者的深入访谈进行评估。将与14名口腔癌幸存者/照顾者一起评估基于网络的原型的可行性。如果至少75%的参与者认为该项目易于使用，并与他们关心的问题相关，易于理解，易于导航，我们将认为该项目是可行的。最后，在完成放射治疗(基线)后，将招募35名幸存者-照顾者双方，我们将评估那些接受干预的人(N=20)在1个月和3个月后在牙齿健康、吞咽康复和生活质量方面的自我报告和客观测量方面是否比那些在常规护理(UC)对照组(N=15)的人有显著改善。创新：CARE是第一个针对口腔癌幸存者及其照顾者的交互式多媒体干预。它也是第一个采取多行为方法来改善这一人群的口腔健康和康复的。同时解决口腔护理、吞咽和营养问题可能会最大限度地降低风险并改善生活质量。影响：通过提供个性化的自我管理和娱乐性、互动性和高度信息量的口腔健康模块，CARE为口腔癌症幸存者和他们的照顾者提供了激励坚持和提高生活质量的巨大希望。这个基于网络的平台具有在全国范围内传播和接触目标人群的巨大潜力。

DESCRIPTION (provided by applicant): Survivors of oral cancers experience persistent sequelae, including abnormally reduced salivation or difficulty swallowing related to their disease and treatment. To minimize subsequent cancer risk and reduce these sequelae, survivors are advised to follow intensive home-based oral care protocols, swallowing rehabilitation regimens, and to make healthy lifestyle changes. Adherence, however, is poor. Although family caregivers can support adherence, they are often unprepared for their caregiving role and have significant knowledge gaps about oral care and rehabilitation. Behavioral interventions that actively involve survivors and their caregivers may prove effective in improving oral health and QOL in this population. This project seeks to establish the feasibility of an interactive, web-based, multimedia intervention called Computer Assisted oral health REhabilitation and Support (CARES). The intervention is based on Self Determination Theory (SDT), which focuses on individuals' needs for developing autonomy (a sense of choice and volition), competence (self-efficacy), and relatedness (a sense of belonging and connection to similar others). CARES seeks to deliver: 1) expert information and personalized behavioral self-assessment to improve motivation for adherence; 2) skills-building exercises to enhance competence for behavioral self- management; 3) reminders sent via text message and email to increase adherence; 4) strategies for caregivers to provide motivating support; and, 5) message boards to promote connection and support. Intervention content will be developed by the multidisciplinary research team, and evaluated by both an external advisory board and in-depth interviews with 18 oral cancer survivors/caregivers. Feasibility of the web-based prototype will be evaluated with 14 oral cancer survivors/caregivers. We will consider the project feasible if at least 75% of participants rate the program as easy to use and relevant to their concerns, easy to understand, and easy to navigate. Finally, 35 survivor-caregiver dyads will be recruited upon completion of radiation treatment (baseline) and we will assess whether those receiving the intervention (N=20) experience significant improvements 1 and 3 months later on self-report and objective measures of dental health, swallowing rehabilitation, and QOL relative to those in a usual care (UC) control group (N=15). Innovation: CARES is the first interactive multimedia intervention that targets oral cancer survivors and their caregivers. It is also the first that takes a multiple-behavioral approach to improving oral health and rehabilitation in this population. Simultaneously addressing oral care, swallowing, and nutritional issues may result in maximal risk reduction and improve QOL. Impact: By providing a personalized self-management and entertaining, interactive, and highly informative oral health modules, CARES holds great promise for motivating adherence and improving QOL for both oral cancer survivors and their caregivers. The web-based platform has great potential for nationwide dissemination and reach to the target population.