Early-Stage Breast Cancer Treatment Decisions by Women with Physical Disabilities

描述（由申请人提供）：今天，许多有严重身体残疾的人都过着长寿和富有成效的生活。与其他人在生命后期一样，这些人可能会发展出危及生命的共病状况，如癌症。然而，由于有严重身体缺陷的患者往往被明确排除在临床治疗试验之外，因此几乎没有科学证据可用于指导残疾人及其医生的治疗决定。对许多病人来说，做出这样的关键决定是复杂的，但身体残疾的人可能面临特殊的挑战。患者不仅必须考虑他们的癌症治疗障碍及其副作用的潜在临床影响，而且还必须考虑非常实际的问题，例如对独立生活的影响，基本日常活动的表现，以及使用助行器和其他辅助技术。癌症可能会使患者对自己的健康以及身体和情感健康的看法进一步复杂化，这些健康和情感健康已经以复杂的方式与他们的残疾联系在一起。对于医生来说，决策可能会受到有意识或无意识的影响，因为社会对某些身体残疾的普遍污名化以及对患者实际能力，生活质量和护理偏好的误解。该R21项目是为响应PA-05-017（“癌症决策：单事件决策”）而提交的，将探讨60岁以下患有I期或II期乳腺癌且存在显著身体损伤的女性的主要和辅助治疗决策。这两个具体目标是：（1）探索有严重身体残疾的妇女及其家人在进行初始乳腺癌治疗时考虑的因素;（2）研究乳腺外科医生，放射肿瘤学家和医学肿瘤学家如何为这些妇女提出治疗建议。我们计划对20名身体残疾的妇女和一名指定的家庭成员进行深入的个人访谈，并对15名专家医生“关键信息提供者”和20名照顾乳腺癌患者的执业医生进行访谈。后一次访谈将利用突出这一群体决策的关键方面的案例。很少有关于患有乳腺癌的严重身体残疾妇女的经历的公开信息。我们的发现将有助于开始教育患者和医生，并可能改善身体残疾妇女的乳腺癌护理。

DESCRIPTION (provided by applicant): Today, many persons with significant physical disabilities live long and productive lives. As do others later in life, these individuals can develop life-threatening comorbid conditions, such as cancer. However, since patients with substantial physical impairments are often explicitly excluded from clinical treatment trials, little scientific evidence is available to guide the therapeutic decisions of persons with disabilities and their physicians. Making such critical decisions is complicated for many patients, but persons with physical disabilities might confront special challenges. Patients must contemplate not only the potential clinical implications of their impairments for cancer treatments and their side effects, but also very practical questions, such as the impact on independent living, the performance of basic daily activities, and the use of mobility aids and other assistive technologies. Cancer could further complicate patients' perceptions of their health and physical and emotional well-being, already tied, in complex ways, to their disabilities. For physicians, decisions may be affected, consciously or unconsciously, by pervasive societal stigmatization of certain physical disabilities and misperceptions about patients' actual abilities, quality of life, and preferences for care. This R21 project, submitted in response to PA-05-017 ("Decision-Making in Cancer: Single-Event Decisions") will explore decisions about primary and adjuvant treatments for women with significant pre- existing physical impairments who develop Stage I or II breast cancer under 60 years of age. The two specific aims are to: (1) explore factors women with significant physical disabilities and their families consider in making initial breast cancer treatments; and (2) to examine how breast surgeons, radiation oncologists, and medical oncologists make therapeutic recommendations for these women. We plan to conduct in-depth, individual interviews with 20 women with physical disabilities and a designated family member, as well as interviews with 15 expert physician "key informants" and 20 practicing physicians caring for breast cancer patients. The latter interviews will draw upon case vignettes that highlight key aspects of decision-making for this population. Very little published information exists about the experiences of women with significant physical disabilities who develop breast cancer. Our findings will help begin educating patients and physicians and could perhaps improve breast cancer care for women with physical disabilities.