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

描述（由申请人提供）：口腔癌幸存者经历持续的后遗症，包括与其疾病和治疗相关的异常唾液分泌减少或吞咽困难。为了尽量减少随后的癌症风险并减少这些后遗症，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，依从性很差。虽然家庭照顾者可以支持依从性，但他们往往对自己的照顾角色没有准备，并且在口腔护理和康复方面存在重大知识差距。幸存者及其照顾者积极参与的行为干预可能对改善这一人群的口腔健康和生活质量有效。这个项目旨在建立一种交互式的、基于网络的多媒体干预的可行性，这种干预被称为计算机辅助口腔健康康复和支持（CARES）。干预是基于自我决定理论（SDT），它关注个体发展自主性（一种选择和意志感）、能力（自我效能感）和相关性（一种归属感和与相似他人的联系感）的需求。CARES旨在提供：1)专家信息和个性化的行为自我评估，以提高依从性的动机；2)技能培养练习，提高行为自我管理能力；3)通过短信和电子邮件发送提醒，以提高依从性；4)照顾者提供激励支持的策略；5)留言板促进联系和支持。干预内容将由多学科研究团队制定，并由外部顾问委员会和对18名口腔癌幸存者/护理人员的深入访谈进行评估。基于网络的原型的可行性将在14名口腔癌幸存者/护理人员中进行评估。如果至少75%的参与者认为该项目易于使用，与他们的关注点相关，易于理解，易于导航，我们将认为该项目可行。最后，在完成放射治疗（基线）后，我们将招募35名幸存者-护理者，我们将评估接受干预的患者（N=20）在1个月和3个月后，相对于常规护理（UC）对照组（N=15），他们在牙齿健康、吞咽康复和生活质量的自我报告和客观测量方面是否有显著改善。创新：CARES是第一个针对口腔癌幸存者及其护理人员的交互式多媒体干预。这也是第一个采用多行为方法来改善这一人群的口腔健康和康复的研究。同时解决口腔护理、吞咽和营养问题可以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、互动性和高信息量的口腔健康模块，CARES在促进口腔癌幸存者及其护理人员的依从性和改善生活质量方面具有很大的希望。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.