Pozzar Rachel, Baldwin Laura-Mae, Goff Barbara A, Berry Donna L
1School of Nursing, Bouvé College of Health Sciences, Northeastern University, 360 Huntington Avenue, Boston, MA 02115 USA.
2Department of Family Medicine, University of Washington, Seattle, WA 98195 USA.
Pilot Feasibility Stud. 2018 Jul 4;4:91. doi: 10.1186/s40814-018-0283-7. eCollection 2018.
Ovarian cancer is the deadliest gynecologic malignancy and the fifth leading cause of cancer death among women living in the USA. Treatment for ovarian cancer that follows the guidelines published by the National Comprehensive Cancer Network is associated with a 33% decrease in disease-specific mortality, yet fewer than 40% of women with ovarian cancer receive guideline-adherent treatment. Little is known about the process by which women with ovarian cancer, their unpaid caregivers, and physicians make decisions about ovarian cancer treatment. We are planning to conduct a population-based study examining the ovarian cancer treatment decision-making process from the perspective of women with ovarian cancer, their caregivers, and physicians using a qualitative approach. Prior to embarking on a large-scale study, we determined it would be beneficial to pilot test our unpaid caregiver recruitment protocol and identify preliminary topics for the main study's interview guide.
We conducted a cross-sectional descriptive study using a qualitative approach. Data were collected via unstructured, individual interviews. Data were analyzed using modified grounded theory methods.
We interviewed six women with ovarian cancer, four unpaid caregivers, and three physicians. The recruitment protocol successfully recruited patient participants but did not allow for direct recruitment of unpaid caregivers, which presented logistical difficulties. The interview guide was adequate to elicit participants' discussion of the major topics of interest; however, the opening statement needed modification to account for physician participants' specialties. Patient and caregiver participants identified three major categories of concepts describing the process of ovarian cancer treatment decision making: (a) choosing a provider, (b) choosing a facility, and (c) choosing a treatment. All three groups of participants addressed the influence of geographic location on treatment decisions, while physicians described encounters with patients declining recommended treatment.
This pilot study met our objectives of testing unpaid caregiver recruitment procedures and identifying topics to include in the interview guide for a planned grounded theory study. Although the thematic results of this study are preliminary, the categories of concepts described by participants provide a framework for the exploration of patient, unpaid caregiver, and physician perspectives of ovarian cancer treatment decision making.
卵巢癌是最致命的妇科恶性肿瘤，也是美国女性癌症死亡的第五大主要原因。遵循美国国立综合癌症网络发布的指南进行卵巢癌治疗，可使疾病特异性死亡率降低33%，然而，只有不到40%的卵巢癌女性接受符合指南的治疗。对于卵巢癌女性患者、其无偿护理者以及医生如何做出卵巢癌治疗决策的过程，我们知之甚少。我们计划开展一项基于人群的研究，采用定性方法，从卵巢癌女性患者、其护理者以及医生的角度审视卵巢癌治疗决策过程。在开展大规模研究之前，我们认为对无偿护理者招募方案进行预试验并确定主要研究访谈指南的初步主题将大有裨益。
我们采用定性方法进行了一项横断面描述性研究。通过非结构化的个人访谈收集数据。使用改良的扎根理论方法分析数据。
我们访谈了6名卵巢癌女性患者、4名无偿护理者和3名医生。招募方案成功招募到了患者参与者，但无法直接招募无偿护理者，这带来了后勤方面的困难。访谈指南足以引发参与者对主要感兴趣话题的讨论；然而，开场白需要修改，以考虑医生参与者的专业领域。患者和护理者参与者确定了描述卵巢癌治疗决策过程的三大类概念：(a)选择医疗服务提供者，(b)选择医疗机构，(c)选择治疗方案。所有三组参与者都谈到了地理位置对治疗决策的影响，而医生则描述了遇到患者拒绝推荐治疗的情况。
这项预试验研究达到了我们的目标，即测试无偿护理者招募程序并确定计划中的扎根理论研究访谈指南中应包含的主题。尽管本研究的主题结果是初步的，但参与者描述的概念类别为探索患者、无偿护理者和医生对卵巢癌治疗决策的看法提供了一个框架。
