Abstract
OBJECTIVE: National Comprehensive Cancer Network (NCCN) guidelines recommend that patients with ovarian cancer receive surgical care from a gynecologic oncologist. However, 15%-30% of patients with ovarian cancer do not receive surgical care from this specialist. The reasons for this remain unknown. We aim at assessing the barriers and attitudes perceived by patients with ovarian cancer who did not receive their primary surgery from a gynecologic oncologist and by diagnosing providers in an exploratory qualitative study. MATERIALS AND METHODS: Patients and providers were sampled through the Iowa Cancer Registry. Participants were interviewed by telephone about barriers that patients face receiving surgical care from a specialist. Interviews were transcribed verbatim, and thematic analysis was completed by two team members. FINDINGS: Providers (n = 10, 13% participation rate) identified many system-level barriers, including poor provider-to-provider communication, long time-to-surgery wait times, and a limited number of gynecologic oncologists working in their referral range. Patients (n = 16, 38% participation rate) denied system-level barriers; however, no patients reported receiving a referral to a gynecologic oncologist. This, in and of itself, constitutes a system-level barrier. Providers identified many barriers that their patients face, whereas patients failed to identify these barriers and denied facing them. Patients described the shock that they experienced after diagnosis and its limitations on their decision-making process. Both providers and patients agreed that the providers were influential in determining care decisions. DISCUSSION: There is a divergence in the perceptions of barriers to care between providers and patients. Open discussions are needed about options and clinical guidelines for surgical ovarian cancer care. Further research is needed to develop and evaluate mechanisms to improve provider-to-patient discussions about surgical recommendations.