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

描述（由申请人提供）：口腔癌的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减少的流涎或吞咽困难。为了最大限度地减少随后的癌症风险并减少这些后遗症，建议幸存者遵循密集的家庭口腔护理方案，吞咽康复方案，并改变健康的生活方式。然而，坚持性很差。虽然家庭护理者可以支持依从性，但他们往往没有准备好承担其护理角色，并且在口腔护理和康复方面存在重大知识差距。积极参与幸存者和他们的照顾者的行为干预可能会证明有效地改善口腔健康和生活质量在这一人群。 该项目旨在建立一个互动的，基于网络的，多媒体干预的可行性，称为计算机辅助口腔健康修复和支持（CARES）。干预措施以自我决定理论为基础，该理论侧重于个人发展自主性（选择感和意志力）、能力（自我效能）和相关性（归属感和与类似他人的联系）的需要。CARES旨在实现：1）专家信息和个性化行为自我评估，以提高坚持的动机; 2）技能建设练习，以提高行为自我管理的能力; 3）通过短信和电子邮件发送提醒，以提高坚持; 4）护理人员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开发，并由外部咨询委员会和与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与14口腔癌幸存者/照顾者进行评估。如果至少有75%的参与者认为该计划易于使用，与他们的关注相关，易于理解，易于导航，我们将认为该项目是可行的。最后，将在完成放射治疗（基线）后招募35名幸存者-护理者配对，我们将评估接受干预的患者（N=20）相对于常规护理（UC）对照组（N=15）在1个月和3个月后的自我报告和牙齿健康、吞咽康复和QOL的客观指标是否有显著改善。创新：CARES是第一个针对口腔癌幸存者及其护理人员的互动多媒体干预。这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方法。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，互动和高度信息化的口腔健康模块，CARES在激励口腔癌幸存者及其护理人员的依从性和改善QOL方面具有很大的潜力。这一网络平台具有在全国范围内传播和接触目标人群的巨大潜力。 公共卫生相关性：CARES是第一个针对口腔癌幸存者及其护理人员的互动多媒体干预。这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方法。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。这一网络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. PUBLIC HEALTH RELEVANCE: 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. The web-based platform has great potential for nationwide dissemination and reach to the target population.