University of Toronto, Toronto, ON. ; Li Ka Shing Knowledge Institute of St. Michael's Hospital, Toronto, ON.
Independent qualitative researcher.
Curr Oncol. 2014 Jun;21(3):e426-33. doi: 10.3747/co.21.1782.
Genomic information is increasingly being used to personalize health care. One example is gene expression profiling (gep) tests, which estimate recurrence risk to inform chemotherapy decisions in breast cancer. Recently, gep tests were publicly funded in Ontario. We explored the perceived utility of gep tests, focusing on the factors influencing their use and value in treatment decision-making by patients and oncologists.
We conducted interviews with oncologists (n = 14) and interviews and a focus group with early-stage breast cancer patients (n = 28) who underwent gep testing. Both groups were recruited through oncology clinics in Ontario. Data were analyzed using the content analysis and constant comparison techniques.
Narratives from patients and oncologists provided insights into various factors facilitating and restricting access to gep. First, oncologists are positioned as gatekeepers of gep, providing access in medically appropriate cases. However, varying perceptions of appropriateness led to perceived inequities in access and negative impacts on the doctor-patient relationship. Second, media attention facilitated patient awareness of gep, but also complicated gatekeeping. Third, the dedicated administration attached to gep was burdensome and led to long waits for results and also to increased patient anxiety and delayed treatment. Collectively, because of barriers to access, those factors inadvertently heightened the perceived value of gep for patients relative to other prognostic indicators.
Our study delineates the factors facilitating and restricting access to gep, and highlights the roles of media and organization of services in the perceived value and utilization of gep. The results identify a need for administrative changes and practice guidelines to support streamlined and standardized use of gep tests.
越来越多的人利用基因组信息来实现医疗保健的个性化。基因表达谱（GEP）测试就是一个例子，它可以估计复发风险，为乳腺癌的化疗决策提供信息。最近，安大略省开始为 GEP 测试提供公共资金。我们探讨了 GEP 测试的感知效用，重点关注影响患者和肿瘤学家在治疗决策中使用和重视 GEP 测试的因素。
我们对肿瘤学家（n=14）进行了访谈，并对接受 GEP 测试的早期乳腺癌患者（n=28）进行了访谈和焦点小组讨论。两组均通过安大略省的肿瘤诊所招募。使用内容分析和恒定性比较技术对数据进行分析。
患者和肿瘤学家的叙述提供了有关促进和限制 GEP 获得的各种因素的见解。首先，肿瘤学家作为 GEP 的把关人，在医学上适当的情况下提供 GEP。然而，对适当性的不同看法导致了获得机会的不公平，对医患关系产生了负面影响。其次，媒体的关注提高了患者对 GEP 的认识，但也使把关变得复杂。第三，专门管理 GEP 的工作繁琐，导致结果等待时间长，患者焦虑增加，治疗延迟。总之，由于获得机会的障碍，这些因素无意中提高了患者对 GEP 的感知价值，而相对于其他预后指标则降低了其价值。
我们的研究描绘了促进和限制 GEP 获得的因素，并强调了媒体和服务组织在 GEP 的感知价值和利用方面的作用。研究结果表明，需要进行行政改革和制定实践指南，以支持 GEP 测试的简化和标准化使用。
