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  • Author: Ana Nieto-Librero x
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Juan Jesús Cruz, Isabel Ruiz Martin, Ana Fernandez, Rosana Martín, Enrique Aranda, Alfredo Carrato, Eduardo Díaz-Rubio, Vicente Guillem, Rafael López, Margarita Feyoo, Nerea Gonzalez-Garcia, Ana Nieto-Librero, Ramón Ferrer, Alicia Gonzalo, and Carlos Camps

Background: Patients with cancer and their caregivers express unmet needs beyond the clinical approach to cancer. The ECO Foundation (Quality and Excellence in Oncology) and the Spanish Association Against Cancer (AECC) have promoted a qualitative research study with the objective to identify and compare the perceptions of newly diagnosed and 2–3 years after diagnosis cancer patients, caregivers, oncologists, nurses, and social workers in relation to a set of nonclinical needs expressed by cancer patients and caregivers, and to obtain concrete and feasible proposals for improvement aimed at satisfying these needs. Methods: A multidisciplinary group of experts developed a questionnaire about information processes for cancer patients and caregivers, shared decision-making, satisfaction with healthcare circuits, the architecture of consultations, psychological support, support of associations, and the received support of hospital social workers. 14 Medical Oncology Services of Spanish hospitals have participated in this study collecting opinions from the study groups. 310 forms were collected, and data were statistically analyzed using Fisher's exact test. Results: Information processes: The opportunity to have a second opinion is positively valuated for 72.6% of patients and 70.2% of caregivers. However, although 62.5% of oncologists referred to offer this option to their patients, only 10.9% of patients reported having received it. Shared decision-making: For 58% of oncologists, patients are sufficiently trained to share decision-making, but only 24.6% of newly diagnosed patients consider being prepared. In addition, although 95.8% of oncologists report offering the participation of their patients in decision-making, only 45.8% of newly diagnosed patients and 64.4% of 2–3 years after diagnosis patients consider having received this opportunity. Psychological support: Psychological assistance was considered positive for 94.2% of the patients, 97.4% of the caregivers, 85.4% of the oncologists, and 97.1% of the nurses. However, only 21.3% of oncologists and 31.4% of nurses recognize offering such care to patients. Conclusions: Knowing the nonclinical needs, not only of patients and caregivers, but also from the healthcare professionals, is essential when designing health strategies that should align the perceptions of patients and healthcare professionals.