| Autor: |
Perestelo-Pérez L; Evaluation Unit of the Canary Islands Health Service (SESCS), Tenerife, Spain. lperperr@gobiernodecanarias.org.; Health Services Research on Chronic Patients Network (REDISSEC), Madrid, Spain. lperperr@gobiernodecanarias.org.; Center for Biomedical Research of the Canary Islands (CIBICAN), Tenerife, Spain. lperperr@gobiernodecanarias.org., Rivero-Santana A; Health Services Research on Chronic Patients Network (REDISSEC), Madrid, Spain.; Center for Biomedical Research of the Canary Islands (CIBICAN), Tenerife, Spain.; Canary Islands Foundation of Health Research (FUNCANIS), Tenerife, Spain., Abt-Sacks A; Canary Islands Foundation of Health Research (FUNCANIS), Tenerife, Spain., Toledo-Chavarri A; Canary Islands Foundation of Health Research (FUNCANIS), Tenerife, Spain., Brito N; Canary Islands Foundation of Health Research (FUNCANIS), Tenerife, Spain., Álvarez-Pérez Y; Canary Islands Foundation of Health Research (FUNCANIS), Tenerife, Spain., González-Hernández N; Health Services Research on Chronic Patients Network (REDISSEC), Madrid, Spain.; Clinical Epidemiology Unit, Galdakao-Usansolo Hospital, Galdakao, Bizkaia, Spain., Serrano-Aguilar P; Evaluation Unit of the Canary Islands Health Service (SESCS), Tenerife, Spain.; Health Services Research on Chronic Patients Network (REDISSEC), Madrid, Spain.; Center for Biomedical Research of the Canary Islands (CIBICAN), Tenerife, Spain. |
| Abstrakt: |
Patients with rare diseases often face difficulties in clinical care due to the low prevalence of their diseases and the resulting healthcare professionals' lack of expertise. Valid and standardized guidelines for clinical management are also lacking due to the scarcity of research and the variability of the clinical expressivity within each disease. In addition, in cases of rare diseases, the patient and health professional relationship may not fit with the traditional assumptions of medical care. Although the communication process between patients and healthcare professionals shares most of the general features of the standard patient-health professional interaction, rare diseases may be burdened with additional issues.In this sense, clinical decision-making in an uncertainty context should take advantage of involving patients in deeper informational process to promote valid shared decision-making between patients/caregivers and healthcare professionals. This process of patient/caregiver empowerment is a priority in the context of rare diseases, as it encourages acquisition of information that will help improving patient-healthcare professional's interaction, and building a collaborative relationship. It is also a chance for healthcare professionals to learn about rare diseases from the perspective of patients.Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied. |
