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

描述(由申请人提供)：今天，许多严重身体残疾的人活得很长，而且富有成效。就像其他人在晚年一样，这些人可能会患上威胁生命的并存疾病，如癌症。然而，由于有严重身体残疾的患者往往被明确排除在临床治疗试验之外，几乎没有科学证据来指导残疾人及其医生的治疗决定。对许多患者来说，做出这样的关键决定是复杂的，但肢体残疾的人可能会面临特殊的挑战。患者不仅必须考虑他们的损伤对癌症治疗的潜在临床影响及其副作用，还必须考虑非常实际的问题，如对独立生活的影响，基本日常活动的表现，以及行动辅助工具和其他辅助技术的使用。癌症可能会使患者对健康以及身体和情感健康的看法进一步复杂化，这些观念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，决策可能会受到普遍存在的社会对某些身体残疾的污名以及对患者实际能力、生活质量和护理偏好的误解的影响，无论是有意还是无意。这个R21项目是根据PA-05-017(“癌症决策：单一事件决策”)提交的，将探索对60岁以下患有严重身体残疾的妇女进行第一或第二阶段乳腺癌的初级和辅助治疗的决定。这两个具体目标是：(1)探索严重身体残疾的妇女及其家人在进行初步乳腺癌治疗时考虑的因素；(2)检查乳房外科医生、放射肿瘤学家和内科肿瘤学家如何为这些妇女提出治疗建议。我们计划对20名肢体残疾妇女和一名指定的家庭成员进行深入的个人访谈，以及对15名内科专家“关键信息者”和20名护理乳腺癌患者的执业医生进行访谈。后一次访谈将利用案例小插曲，突出这一群体决策的关键方面。关于患有严重身体残疾的妇女罹患乳腺癌的经历，已发表的信息很少。我们的发现将有助于开始教育患者和医生，并可能改善对肢体残疾女性的乳腺癌护理。

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.