Patient, physician, and caregiver perspectives on ovarian cancer treatment decision making: lessons from a qualitative pilot study

Abstract Background 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. Methods 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. Results 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. Conclusions 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.