Shared decision making from the perspective of the cancer patient: participatory roles and evaluation of the process

Abstract

resuMenFundamento. En España no existe un claro conocimiento sobre el grado en que la Toma de Decisiones Compartidas (TDC) es llevada a la práctica habitual en oncología. Nuestro trabajo analiza el rol preferido y el rol percibido de los pacientes oncológicos y mide el proceso de TDC desde su perspectiva. Material y métodos.Estudio descriptivo transversal mediante cuestionario autoadministrado a pacientes con distintos tipos de cáncer. Para evaluar el rol preferido y percibido por el paciente utilizamos The Control Preference Scales (CPS) y para medir la TDC se utilizó The nineitem Shared Decision Making Questionnaire (SDM-Q-9).resultados. De los 132 pacientes encuestados, solo 118 proporcionaron datos analizables. No se encontraron evidencias de que el sexo, edad, nivel educativo o tipo de tumor afectaran al rol preferido o al percibido. Solo el 59,3% estaba de acuerdo con el rol ejercido. Todos los que preferían un rol pasivo lo alcanzaban (21,2%), mientras que de los que deseaban uno compartido (78,8%), solo el 48,39% lo lograba y el 51,61% restante desempeñaba uno pasivo. Ninguno prefirió ni ejerció un rol activo. El conjunto de pacientes valoró el proceso de TDC con una puntuación de 41,07±5,94, en una escala de 0 a 100, alcanzando los pacientes urológicos una puntuación máxima de 61,39 ± 13,24.conclusiones. Nuestro estudio no encuentra evidencias de que, desde el punto de vista del paciente oncológico, el modelo de TDC esté implementado en la práctica.Palabras clave: Cáncer. Toma de decisiones. Satisfacción del paciente. Participación del paciente. Rol. aBstractBackground. In Spain there is no clear knowledge about the degree to which Shared Decision Making (SDM) is carried out in the normal practice of oncology. Our article analyses the preferred role and the perceived role of oncological patients and measures the SDM process from their perspective.

Applying Reflective Multicriteria Decision Analysis (MCDA) to Patient–Clinician Shared Decision-Making on the Management of Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET) in the Spanish Context

“…The right to patient autonomy is recognized by Spanish law [ 9 ] and several initiatives have been launched in Spain to empower patients to actively participate in healthcare decisions [ 9 , 10 ]. In a recent survey, the majority of Spanish cancer patients preferred a shared approach to decision-making, but only about half of them reported that this is what they actually experienced in practice [ 11 ], indicating a need to further develop approaches to support patient involvement.…”

Preferred and perceived participation roles of oncological patients in medical decision-making: Results of a survey among users of the German Cancer Information Service

“…The review also showed a well-known gap between patients' preferences and their actual experiences with SDM, especially for patients with collaborative decision-making preferences [9]. Previous research demonstrated that participation preferences are correlated with sociodemographic variables [3,4,7,8,10], e.g. younger age and higher educational level have been repeatedly associated with active participation preferences [4,10,11].…”

“…Yet, a large number of studies shows that the majority of oncological patients of various tumor entities want to be actively involved in medical decisions [3][4][5][6][7][8]. According to a systematic review of 31 studies published between 2009 and 2020, almost half of cancer patients prefer a collaborative role, while about a quarter each prefer an active or passive role in the decision-making process with their physician [9].…”