Qualitative study of information needs in advanced ovarian cancer: communication among patients, caregivers and healthcare providers regarding the disease, pharmacological treatment and non-pharmacological support.

Abstract

Qualitative evidence in ovarian cancer (OC) doctor-patient-caregiver communication is scarce. This study explored the information needs of patients and caregivers, comparing these to healthcare professionals' (HCPs) perspectives, to uncover why gaps exist. Qualitative, observational, multicentre and cross-sectional study with OC patients, their caregivers and HCPs. Qualitative data were collected through remote semistructured interviews. Themes were identified using thematic analysis. The EORTC QLQ-C30 and the disease-specific EORTC QLQ-OV28 were collected as quality of life measures and analysed descriptively. Patients were recruited during their routine visits in five university hospitals in Spain. Patients were ≥18 years of age in stages III or IV according to FIGO classification, were on first line treatment or recurrent and platinum sensitive with the most complex molecular profiles. 19 patients, 7 caregivers and 10 HCPs participated in the study. Three main themes emerged: (a) patient information needs about the disease and pharmacological treatments, (b) patient information needs about non-pharmacological support and (c) caregiver information needs. The first theme was viewed through three differing attitudes (the Involved, Trusting and Indecisive), with HCPs' agreeing with the attitudes but without adjusting transmitted information accordingly. For the second theme, patients expressly desired more information on psychosexual issues, psychological support and patient associations (PAs), and HCPs concurred with a need for more non-pharmacological support. Regarding the third theme, caregivers expressed not being engaged by HCPs, despite HCPs recognising their importance, with nurses being more empathetic than oncologists on this matter. These results highlight the importance of understanding the information needs of OC patients and their caregivers. This understanding enables HCPs to provide better support, helping patients and caregivers make more informed health decisions.