Previvors Recharge: A Resilience Program for Cancer Previvors

癌症预防者恢复活力计划：癌症预防者恢复力计划

• 批准号: 10698965
• 负责人: Kerry Evers
• 金额: $ 26.53万
• 依托单位: PRO-CHANGE BEHAVIOR SYSTEMS, INC.
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-05-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10698965
• 关键词: Address; Adherence; Affect; Age; Algorithms; American; Anxiety; Area; Back; Behavior; Cancer Etiology; Caring; Charge; Child; Communication; Complex; DNA Sequence Alteration; Data; Development; Diagnosis; Effectiveness; Emotional; Face; Family; Family Caregiver; Family health status; Family member; Fatigue; Feedback; Foundations; Future; Gene Mutation; General Population; Genes; Genetic Predisposition to Disease; Germ-Line Mutation; Goals; Health; Health Personnel; Health Promotion; Hearing; Hereditary Malignant Neoplasm; Hereditary Neoplastic Syndromes; Individual; Inherited; Intervention; Knowledge; Learning; Life; Malignant Neoplasms; Meaning and purpose; Measures; Mental Depression; Mental Health; Metaphor; Mutation; Operative Surgical Procedures; Organ; Outcome; Parents; Participant; Persons; Phase; Population; Process; Program Acceptability; Public Health; Quality of life; Recommendation; Recording of previous events; Research; Resistance; Resources; Risk; Risk Reduction; Scanning; Science; Screening Result; Screening for cancer; Specific qualifier value; Stress; Technology; Testing; Text Messaging; Thinking; Time; Uncertainty; behavior change; cancer diagnosis; cancer risk; cancer type; coping; cost effective; design; digital; epidemiological model; evidence base; experience; genetic testing; improved; innovation; intervention program; lifetime risk; next generation; pilot test; programs; promote resilience; prophylactic; protective behavior; prototype; provider communication; recruit; resilience; resilience scale; skills; social; stressor; tailored text messaging; tool

It is estimated that approximately 5-10% of all diagnosed cancers are caused by Hereditary Cancer Syndromes (HCS) that are associated with germline mutations (inherited genetic mutations passed directly from a parent to a child that create a genetic predisposition to certain types of cancer). Recent epidemiologic models indicate that 1 in 279 people may be carriers of one of the most common HCS, and advances in genetic testing continue to identify new inherited mutations. Individuals with an HCS (Previvors) have up to an 80% lifetime risk of developing cancer and are at an increased risk of developing multiple primary cancers during their lifetime, often with onset at an early age. Previvors face multiple forms of adversity, including a multitude of annual cancer screenings and the uncertainty of not only their own health but the health of affected family members. Previvors also regularly experience “scanxiety” while anticipating, undergoing, and awaiting the results of screenings. While interventions to promote resilience among Previvors would address an important unmet public health need, existing solutions have a number of gaps that limit effectiveness, widespread dissemination, and applicability to Previvors. The proposed research will employ a participatory design approach to create and examine the acceptability and preliminary effects of PREcharge, a resilience-boosting solution specifically designed for Previvors and delivered primarily via bi-directional text messaging. PREcharge will use proven approaches to behavior change tailoring to increase resilience by promoting a positive mindset, strong social connections, and a deep sense of meaning and purpose while also proactively addressing scanxiety. The design and development of PREcharge will be informed by extensive and ongoing end-user input from 10 Previvor advisors as well as 6 experts in this area. One hundred and twenty-nine Previvors will be recruited for a 30-day pilot test. Phase I milestones will include: 1) acceptability of the program, as evidenced by overall mean ratings of at least 4 out of 5 on a widely used acceptability measure and obtaining 75% endorsement that users would recommend the program to a fellow Previvor; (2) engagement as evidenced by continued receipt of text messages and one or more interactions with the online tools by at least 70% of participants; and (3) benefit from the program, evidenced by statistically significant pre-post improvement on the Connor Davidson Resilience Scale. Pilot participants who fail to sustain engagement will be asked to provide feedback on how PREcharge could be improved. The data from this pilot test will lay the foundation for the further development of tailored text- messaging solutions to improve resilience outcomes among the expanding population of Previvors. This type of easily disseminable, potentially cost-effective, and highly tailored solution would overcome the limitations of existing interventions and provide a framework for messaging on other key behaviors (e.g., health care provider communication) in the future.

据估计，所有诊断出的癌症中大约有 5-10% 是由遗传性癌症引起的 与种系突变（直接遗传的遗传突变）相关的综合征（HCS） 从父母传给孩子，对某些类型的癌症有遗传倾向）。 模型表明，每 279 人中就有 1 人可能是最常见 HCS 之一的携带者，并且遗传技术的进步 继续进行测试以识别新的遗传突变，具有 HCS（前存活者）的个体的发生率高达 80%。 终生患癌症的风险，并且在患病期间患多种原发性癌症的风险增加 他们的一生，通常在很小的时候就开始面临多种形式的逆境，包括多种逆境。 每年的癌症筛查次数以及他们自身健康和受影响家庭健康的不确定性 前幸存者在期待、经历和等待的过程中也会经常经历“扫描焦虑”。 虽然提高幸存者恢复能力的干预措施将解决一个重要问题。 由于公共卫生需求未得到满足，现有解决方案存在许多缺陷，限制了有效性、广泛存在 传播以及对 Previvors 的适用性。 拟议的研究将采用参与式设计方法来创建和检查 PREcharge 的可接受性和初步效果，这是一种专门为 Previvors 和主要通过双向短信发送的 PREcharge 将使用经过验证的方法来实现。 定制行为改变，通过促进积极的心态、牢固的社会联系和 深刻的意义和目的感，同时也积极解决设计和开发的焦虑。 PREcharge 的 10 名 Previvor 顾问以及 6 名最终用户的广泛且持续的意见将被告知 将招募 129 名该领域的专家进行为期 30 天的试点测试。 里程碑将包括： 1) 该计划的可接受性，通过总体平均评级至少达到 4 分来证明 5 在广泛使用的可接受性衡量标准上获得 75% 的认可，认为用户会推荐 向一位幸存者进行计划；(2) 通过持续收到短信和一条或一条信息证明参与度 至少 70% 的参与者与在线工具进行更多互动；(3) 从该计划中受益； 康纳·戴维森复原力试点的前后统计显着改善证明了这一点。 未能维持参与的参与者将被要求提供有关如何进行 PREcharge 的反馈 此次试点测试的数据将为进一步开发定制文本奠定基础。 消息传递解决方案可提高不断扩大的幸存者群体的恢复能力。 易于传播、具有潜在成本效益且高度定制的解决方案将克服以下限制： 现有的干预措施，并提供一个框架来传达其他关键行为（例如医疗保健 供应商沟通）在未来。