a School of Social Policy and Practice, University of Pennsylvania , Philadelphia , PA.
b School of Nursing and American Family Children's Hospital, University of Wisconsin-Madison , Madison , WI.
J Psychosoc Oncol. 2018 Sep-Oct;36(5):529-544. doi: 10.1080/07347332.2018.1469565. Epub 2018 Jun 4.
Deleterious mutations in BRCA1 or BRCA2 genes increase a woman's lifetime risk of breast and ovarian cancer. Risk management guidelines endorse early detection and prevention behaviors. Despite expressed intent, uptake of these measures remains low. This longitudinal, qualitative study integrated retrospective and prospective data to distinguish factors shaping intent to act from those that are catalysts to taking action to reduce cancer risk. Twelve BRCA1/2 mutation-positive women participating in the National Cancer Institute's Breast Imaging Study aged 18-35 completed two semi-structured interviews three years apart. Researchers completed focused coding to identify points of behavioral intent and action and contextual factors acting as catalysts upon participant narratives. All women shared only two action steps: seeking information about cancer risk and completing genetic testing. The constellation of action steps created a unique action trajectory that was defined, with precise ideas about risk perception and clear behavioral response, or iterative, in which unanticipated life events shifted the speed, accessibility, or order in which risk management and family planning goals were prioritized, planned, or executed. Factors shifting action steps included salient, unanticipated life events, such as infertility, insurance/financial constraints, birth of the last child, or a relative's cancer diagnosis. Focus on cancer morbidity may obfuscate how women prioritize actions, and ignore varied pragmatic, relational, and social factors affecting how intended actions are completed, particularly during the reproductive years. We recommend providers update patients' risk management plans at each visit to assess readiness for next steps and reduce reluctance to discuss, or guilt associated with, change.
BRCA1 或 BRCA2 基因突变会增加女性终生患乳腺癌和卵巢癌的风险。风险管理指南支持早期发现和预防行为。尽管有表达的意愿，但这些措施的采用率仍然很低。这项纵向、定性研究整合了回顾性和前瞻性数据，以区分塑造行为意图的因素和促使采取行动降低癌症风险的因素。12 名参与美国国家癌症研究所乳腺成像研究的 BRCA1/2 基因突变阳性、年龄在 18-35 岁的女性完成了两次相隔三年的半结构式访谈。研究人员完成了重点编码，以确定行为意图和行动的要点以及参与者叙述中作为催化剂的背景因素。所有女性都只采取了两个行动步骤：寻求有关癌症风险的信息和完成基因检测。行动步骤的组合形成了一个独特的行动轨迹，具有明确的风险感知和明确的行为反应的明确想法，或者是迭代的，其中意外的生活事件改变了风险管理和计划生育目标的优先级、计划或执行的速度、可及性或顺序。改变行动步骤的因素包括突出的、意外的生活事件，如不孕、保险/财务限制、最后一个孩子的出生或亲属的癌症诊断。对癌症发病率的关注可能会掩盖女性如何优先考虑行动，并且忽略了各种实际的、关系的和社会的因素，这些因素影响着意图行动的完成，尤其是在生育年龄。我们建议提供者在每次就诊时更新患者的风险管理计划，以评估准备采取下一步的情况，并减少对讨论的不情愿或对变化的内疚感。
