Underhill Meghan L, Pozzar Rachel, Chung Daniel, Sawhney Mandeep, Yurgelun Mathew
Dana-Farber Cancer Institute, 450 Brookline Ave, LW522, Boston, MA, 02215, USA.
Massachusetts General Hospital, Boston, USA.
J Cancer Educ. 2020 Feb;35(1):194-203. doi: 10.1007/s13187-019-01623-1.
Recent national guidelines recommend genetic risk assessment for all patients diagnosed with pancreatic cancer, yet individuals with pancreatic cancer obtain genetic testing at suboptimal rates. Both patient and provider factors play a role in adherence to genetic testing recommendations. The purpose of this study was to understand health care provider perspectives of caring for patients with inherited pancreatic cancer risk. The study was a cross-sectional mixed method study utilizing a qualitative interview and a survey. The study sample included health care providers who provide care for patients with pancreatic cancer or inherited risk. Qualitative data were analyzed using content analysis, while quantitative data were summarized using descriptive statistics. Thirty participants had complete interview data and 29 completed a survey. The sample was comprised of physicians (n = 17), genetic counselors (n = 6), nurses (n = 3), and social workers (n = 3). Respondents were less confident in their ability to identify patients with inherited pancreatic cancer risk compared with other hereditary cancer syndromes. Several challenges were identified including the pancreatic cancer illness trajectory; lack of evidence-based practice guidelines; difficulty interpreting genetic test results; and difficulty following up on referrals. Participants perceived a lack of educational resources for patients with inherited pancreatic cancer risk. Health care providers who care for individuals with inherited pancreatic cancer risk face challenges that are distinct from those encountered during the care of individuals for other hereditary cancers. There is a need for additional resources at the patient-, provider-, and system-level.
近期的国家指南建议对所有确诊为胰腺癌的患者进行遗传风险评估,但胰腺癌患者进行基因检测的比例并不理想。患者和医疗服务提供者因素都对遵循基因检测建议有影响。本研究的目的是了解医疗服务提供者对照顾有遗传性胰腺癌风险患者的看法。该研究是一项横断面混合方法研究,采用了定性访谈和调查。研究样本包括为胰腺癌患者或有遗传风险的患者提供护理的医疗服务提供者。定性数据采用内容分析法进行分析,定量数据采用描述性统计进行总结。30名参与者有完整的访谈数据,29名完成了调查。样本包括医生(n = 17)、遗传咨询师(n = 6)、护士(n = 3)和社会工作者(n = 3)。与其他遗传性癌症综合征相比,受访者对识别有遗传性胰腺癌风险患者的能力信心较低。确定了几个挑战,包括胰腺癌的疾病轨迹;缺乏循证实践指南;难以解读基因检测结果;以及难以跟进转诊。参与者认为针对有遗传性胰腺癌风险的患者缺乏教育资源。照顾有遗传性胰腺癌风险个体的医疗服务提供者面临的挑战与照顾其他遗传性癌症个体时遇到的挑战不同。在患者、医疗服务提供者和系统层面都需要额外的资源。