Atención centrada en la paciente con cáncer ginecológico y de mamaanálisis de las preferencias, necesidades y toma de decisiones en el proceso de gestión de la información

Abstract

INTRODUCTION: An appropriate and quality doctor-patient relationship is characterized by a longitudinal relationship between doctor and patient (continuity of care), an agreement between both on the clinical problem and its treatment, mutual trust, and fluid and open communication between both. Among the different aspects that characterize the doctor-patient relationship, one of the most studied in the literature is the levels of communication. Patients, regardless of sociodemographic variables, generally want to know the details of their diagnosis and the possibility of a cure. However, several studies indicate that the information provided by doctors is partial. The transmission of sad news in medicine, understanding as such, that which once received by our patients will drastically alter the vision of their future, is something that professionals in oncology are usually used to. However, there is not enough research on the needs of our patients in this respect. OBJECTIVE: To identify the needs, preferences, and management of the information process in gynecological and breast cancer patients in our environment. MATERIAL AND METHODS: An intentional non-probabilistic sampling was carried out in the Gynecological Oncology unit of the main hospital in Murcia (Spain). All participants were women between 25 and 86 years old (mean = 55.2 years; SD = 13.2 years) who had been diagnosed with breast, cervical, endometrial or ovarian cancer in the last ten years. 402 women consented to our research based on self-reported questionnaires but 364 returned completed questionnaires. There were five questionnaires to answer: 1) Control Preferences Scale by Degner and Sloan (CPS), 2) Assessment of the Degree of Adherence to the SPIKES Protocol when they heard about cancer (Marshollek et al.) 3) Preferences in cancer information (adapted from the MPP Measure of Patient's Preferences), 4) Level of resilience (Wagnild and Young's RS-14 Resilience Scale) and 5) sociodemographic and clinical variables in a questionnaire developed ad hoc for our research. A transversal associative design was applied, and descriptive and inferential techniques were used for the statistical analysis. RESULTS: The patients mostly opted for a preferred passive role (52%) and a perceived one (69%). The agreement between perceived role and preferred role was 58.3%, the greatest disagreement was between shared preferred role and passive perceived role. Women rated compliance with the dimensions Perception (36.5%) and Invitation (27.7%) of the SPIKES protocol as very poor. The aspects related to the treatment and the detailed explanation of the medical tests were the two best valued pieces of information, not considering the presence of another healthcare professional during the cancer diagnosis interview as a priority. The patients also showed a high level of resilience, although the older ones obtained significantly lower scores. CONCLUSIONS: A passive role in decision making after the diagnosis of the oncological disease is mostly confirmed, although more than a fifth of our patients preferred but did not obtain a more active role. By assuming a passive role in decision-making on the part of the patient, we professionals neglected the Perception and Invitation dimensions that would include their values, preferences, and circumstances to encourage a shared role. The SPIKES protocol, as a widely established model for communicating bad news, should be implemented properly in oncologist information, taking into consideration the communication preferences of patients and paying attention to those with lower levels of resilience.