Brazilian breast cancer patient-reported outcomes: What really matters for these women

Abstract

IntroductionPatient-Reported Outcomes (PRO) are directly reported by the patient without interpretation of the patient's response by a clinician or anyone else and pertains to the patient's health, quality of life, or functional status associated with health care or treatment. It can provide patients’ perspectives regarding treatment benefit and harm beyond survival and are often the outcomes of most importance to patients. This study aims to describe and analyze outcomes reported by Brazilian women diagnosed with breast cancer and rank the most important attributes for these patients.MethodsObservational descriptive study composed of exploratory interviews followed by online questionnaires applied to a convenience sample of women diagnosed with breast cancer.ResultsTwelve women were interviewed to explore the main outcomes and preferences about their treatments, such as the most common side effects and the most impacted aspects of life after diagnosis and BC treatment. Psychological, emotional, and sexual impacts were frequently described as impacted aspects. Fifty-three women, from all the five Brazilian regions, answered the online questionnaire. Following an order of importance ranking, the following outcomes were chosen, respectively: overall survival, progression-free survival; and quality of life. The treatment effects that were considered less important, among this sample, were pain and adverse events.ConclusionsThinking about expanding the therapeutic quality of users, it is essential to take into account the experiences of patients. PRO is a trend in current research to achieve this goal, in order to influence the decisions of HTA agencies about the importance of valuing outcomes that affect patients' lives.