Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer: Insights from Patients, Caregivers, and Providers
Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer: Insights from Patients, Caregivers, and Providers
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DOI：
10.1007/s13187-014-0657-3
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发表时间：
2014-12-01
影响因子：
1.6
通讯作者：
Ganti, Apar K.
中科院分区：
文献类型：
--
作者：
Islam, K. M.;Opoku, Samuel T.;Ganti, Apar K.
参与性和以患者为中心的癌症研究方法被强调为使患者参与临床研究的最适当手段。然而，目前缺乏以患者为中心的肺癌预后研究（PCOR）。以往试图定义肺癌治疗成功的研究通常没有包括患者和护理人员在治疗决策中的看法和观点。此外，对于肺癌患者参与PCOR的有效策略知之甚少。我们试图深入了解患者、护理人员和提供者对肺癌治疗成功的看法，以及患者参与肺癌PCOR的策略。四个焦点小组由来自内布拉斯加州和南达科他州四个癌症中心的提供者、患者和护理人员组成。共有36名提供者、患者和护理人员参与了这项研究。患者和护理人员确认，生存率不应单独作为肺癌治疗成功的衡量标准，治疗成功的定义应强调在整个治疗过程中有效的临床指导、症状管理、功能和生活质量等因素。临床医生参与者注意到，治疗成功的定义随着时间的推移而演变，似乎与患者的化疗经历有关。与会者确定了参与研究的障碍和促进因素，并提出了招募和留住研究参与者的战略建议。我们的研究表明，患者可以成功地在临床研究中扮演积极和参与的角色，从参与者到合作伙伴。从焦点小组与会者的热情来看，患者和护理人员希望参与并从事临床研究。
Participatory and patient-centered approaches to cancer research have been highlighted as the most appropriate means of engaging patients in the conduct of clinical research. However, there is a paucity of patient-centered outcomes research (PCOR) on lung cancer. Previous studies seeking to define lung cancer treatment success have generally not included patients' and caregivers' perceptions and views in treatment decision-making. Additionally, little is known about effective strategies for the engagement of lung cancer patients in PCOR. We sought to gain insights into the perceptions of patients, caregivers, and providers on lung cancer treatment success, as well as on strategies for patient engagement in lung cancer PCOR. Four focus groups were conducted with provider, patient, and caregiver participants from four cancer centers in Nebraska and South Dakota. A total of 36 providers, patients, and caregivers participated in this study. Patients and caregivers confirmed that survival alone should not be the measure of lung cancer treatment success and that definitions of treatment success should emphasize factors such as effective clinical guidance throughout treatment, symptom management, functionality, and quality of life. Clinician participants noted that the definition of treatment success evolved over time and appeared to be linked to patients' experiences with chemotherapy. Participants identified barriers to and facilitators of research participation and suggested strategies for the recruitment and retention of research participants. Our study indicates that patients can successfully play active and engaged roles in clinical research, ranging from participant to partner. Judging from the enthusiasm of our focus group attendees, patients and caregivers want to participate and be engaged in clinical research.