Facilitating Web-based Patient Decision Support for Hereditary Breast Cancer Risk

促进基于网络的遗传性乳腺癌风险患者决策支持

• 批准号: 7575262
• 负责人: MARY Beryl DALY
• 金额: $ 21.77万
• 依托单位: FOX CHASE CANCER CENTER
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-03-01 至 2011-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7575262
• 关键词: Address; Affective; Area; Basic Behavioral Science; Benign; Breast Diseases; Cancer Information Service; Caring; Chemoprevention; Classification; Clinical; Cognitive; Complement; Complex; Conflict (Psychology); Cues; Data; Decision Making; Decision Support Systems; Development; Diagnosis; Distress; Effectiveness; Emotional; Environment; Evaluation; Experimental Designs; Face; Family; Family history of; Foxes; Future; Genetic; Genetic Programming; Genetic screening method; Goals; Health; Health Personnel; Health Professional; Health Services; Healthcare; Hereditary Breast Carcinoma; High Risk Woman; Histologic; Hyperplasia; Impact evaluation; Individual; Informal Social Control; Inherited; Intervention; Intervention Studies; Intraductal Hyperplasia; Knowledge; Life; Literature; Lobular; Malignant Neoplasms; Mastectomy; Measures; Mediating; Mediator of activation protein; Medical center; Menopausal Status; Methods; Modeling; Monitor; Morbidity - disease rate; Movement; NCI Center for Cancer Research; National Cancer Institute; Online Systems; Operative Surgical Procedures; Outcome; Ovariectomy; Participant; Patient Participation; Patients; Persons; Phase; Pilot Projects; Pre-Post Tests; Process; Psychological Factors; Public Health; Quality Control; Raloxifene; Randomized; Randomized Clinical Trials; Regrets; Research; Resources; Risk; Risk Assessment; Risk Behaviors; Risk Management; Risk Reduction; Risk Reduction Behavior; Sampling; Side; Staging; Surgical Oncology; Tamoxifen; Target Populations; Testing; Trust; Uncertainty; Upper arm; Visit; Woman; Work; base; cancer chemoprevention; cancer genetics; cancer risk; clinical care; design; efficacy testing; evidence base; experience; high risk; improved; information processing; innovation; instrument; lobular breast carcinoma in situ; malignant breast neoplasm; meetings; member; mortality; mutation carrier; prevent; primary outcome; programs; prophylactic; prototype; risk perception; social; theories; therapy development; usability; web site

DESCRIPTION (provided by applicant): For women at high risk of breast cancer, it is important to help them realistically assess their decision making needs and access quality decision support resources so they can make informed, value-sensitive decisions about chemoprevention. This presents a timely clinical and public health opportunity to inform women about their breast cancer risk decisions and support their decision-making needs through an innovative web-based decision support intervention to complement clinical care, that is available whenever, wherever, and as often as needed during the decision-making period. The proposed project will be guided by the Cognitive-Social Health Information Processing model overall, and incorporate the Ottawa Decision Support Framework in one consistent decision support process. Specific aims are to: (1) Aim 1: Develop and refine a web-based patient decision support module for high-risk women making a decision about breast cancer chemoprevention, to be used as a prototype for designing a more comprehensive Trusted Advisor for Cancer Health Decisions (TACHD) decision support system, and (2) Aim 2: Conduct a formative evaluation of the impact of the chemoprevention module, which will include a pilot study and a process evaluation. For Aim 1, TACHD development will follow three phases that will result in: (1) functional HTML screens; (2) a fully functional intervention web site; and (3) an administrative functionality. They will be user- tested and usability tested with the target population. For Aim 2, pilot testing of the chemoprevention decision support module will be conducted in a two-group pre- post-test experimental design with 64 at-risk women identified through Fox Chase Risk Assessment Programs and the NCI Clinical Cancer Genetics Program at National Naval Medical Center. A process evaluation analysis will assess participants' experiences using TACHD. For aim 2 analyses, (1) two-sided two-sample paired t-tests will evaluate the impact of TACHD on changes in the primary outcome of decisional conflict, as well as decision stage, attentional style, cancer worry, cancer distress, and cancer risk perception; (2) two-sample, paired t-tests will identify discrete versions of psychological factors associated with differential changes in decisional conflict; and (3) potential moderator (attentional style) and mediator variables (cancer worry, cancer distress, cancer risk perception) will be explored. Decision support interventions such as TACHD can promote quality decisions -- defined as informed and consistent with personal values -- among individuals concerned about breast cancer risk and result in better public health outcomes such as improved risk reduction behaviors and lower cancer-related morbidity and mortality.

描述(由申请人提供)：对于乳腺癌高危女性，重要的是帮助她们现实地评估自己的决策需求，并获得高质量的决策支持资源，以便她们能够就化学预防做出知情的、对价值敏感的决定。这提供了一个及时的临床和公共卫生机会，让妇女了解她们的乳腺癌风险决定，并通过创新的基于网络的决策支持干预来支持她们的决策需求，以补充临床护理，在决策期间，无论何时何地，只要需要，都可以使用。拟议的项目总体上将以认知-社会健康信息处理模式为指导，并将渥太华决策支持框架纳入一个一致的决策支持进程。具体目标是：(1)目标1：为作出乳腺癌化学预防决策的高危妇女开发和完善基于网络的患者决策支持模块，作为设计更全面的可信癌症健康决策顾问(TACHD)决策支持系统的原型，以及(2)目标2：对化学预防模块的影响进行形成性评估，其中将包括试点研究和过程评估。对于目标1，TACHD的开发将经历三个阶段，这三个阶段将导致：(1)功能性超文本标记语言屏幕；(2)全功能干预网站；(3)行政功能。它们将接受用户测试，并在目标人群中进行可用性测试。对于目标2，化学预防决策支持模块的试点测试将以两组测试前-后实验设计进行，通过国家海军医学中心的福克斯大通风险评估计划和国家海军医学中心的美国国家癌症研究所临床癌症遗传学计划确定为高危女性。过程评估分析将评估参与者使用TACHD的经验。对于Aim 2分析，(1)双样本双样本配对t检验将评估TACHD对决策冲突的主要结果的变化以及决策阶段、注意风格、癌症担忧、癌症痛苦和癌症风险感知的影响；(2)双样本配对t检验将确定与决策冲突的不同变化相关的心理因素的离散版本；以及(3)潜在的调节变量(注意风格)和中介变量(癌症担忧、癌症痛苦、癌症风险感知)将被探索。像TACHD这样的决策支持干预措施可以在关心乳腺癌风险的个人中促进高质量的决策--定义为知情和符合个人价值观--并带来更好的公共健康结果，如改善降低风险的行为，降低与癌症相关的发病率和死亡率。