Search

espanolObjetivo Explorar el proceso de decision de las personas que viven con el virus de la inmunodeficiencia humana (VIH) y participan en ensayos clinicos de antirretrovirales. Metodo Estudio retrospectivo transversal. Las variables de resultado fueron los motivos para participar, el rol de participacion percibido (Escala de preferencia de control), la Escala de conflicto decisional y la Escala de arrepentimiento decisional. Se realizo una estadistica descriptiva y se establecieron asociaciones entre estas variables con variables sociodemograficas y clinicas usando tecnicas no parametricas. Resultados Las razones para participar fueron la gratitud hacia la Fundacion Huesped (47%), la recomendacion del medico (32%) y la dificultad percibida para acceder al tratamiento en un hospital publico (28%). Los pacientes opinan que tomaron su decision solos (54,8%) o en colaboracion con el medico (43%). El conflicto en la decision fue bajo, aunque hubo cierto conflicto en la subescala de apoyo (mediana=16,67). La educacion se relaciono con el conflicto en la decision (mayor en pacientes con menor nivel educativo; p=0.018), mientras que la educacion, el diagnostico reciente, vivir solo, la menor edad y la recomendacion del medico de ir a la Fundacion Huesped se relacionaron con un mayor conflicto en diferentes subescalas. Nadie se arrepintio de su participacion. Conclusiones Desde la perspectiva de los participantes, en el proceso de toma de decisiones se respeto su autonomia, hubo poco conflicto decisional y no aparecen signos de arrepentimiento. A pesar de este contexto favorable, los resultados destacan la necesidad de mejorar el apoyo a las decisiones en las personas mas vulnerables (con menos educacion, de diagnostico reciente o con menos apoyo social) para garantizar la equidad en la calidad del proceso de decision. EnglishObjective To explore the decisional process of people living with human immunodeficiency virus (HIV) currently enrolled in antiretroviral clinical trials. Method Cross-sectional retrospective study. Outcome variables were reasons to participate, perceived decisional role (Control Preference Scale), the Decisional Conflict Scale and the Decisional Regret Scale. Descriptive statistics were calculated, and associations among these variables and with sociodemographic and clinical characteristics were analyzed with non-parametric techniques. Results Main reasons to participate were gratitude towards Fundacion Huesped (47%), the doctor's recommendation (32%), and perceived difficulty to access treatment in a public hospital (28%). Most patients thought that they made their decision alone (54.8%) or collaboratively with the physician (43%). Decisional conflict was low, with only some conflict in the support subscale (median=16.67). Education was the only significant correlate of the total decisional conflict score (higher in less educated patients; p=0.018), whereas education, recent diagnosis, living alone, lower age, being man and doctor's recommendation to go to Fundacion Huesped related to higher conflict in different subscales. Nobody regretted to participate. Conclusions The decision making regarding participation in HIV trials, from the perspective of participants, was made respecting their autonomy and with very low decisional conflict. Currently, patients show no signs of regret. However, even in this favorable context, results highlight the necessity of enhancing the decision support in more vulnerable patients (e.g., less educated, recently diagnosed or with less social support), thus warranting equity in the quality of the decision making process.

Currently, there is no registry of utility values for the Spanish population that could potentially be used in economic evaluations. Consequently, a systematic review of utilities or preferences for health states in the Spanish population was conducted. The results related to mental health are reported.A systematic review of the literature was conducted. The main databases searched were MEDLINE, CRD, Embase, PsycINFO, CINAHL, and Cochrane. The search strategy combined terms related to utilities and Spain. The inclusion criteria comprised the resident population in Spain, whether affected by any disease or not; the reported utilities had to be evaluated through a tool validated in Spain (i.e., EQ-5D, HUI, SF-6D) and/or following accepted techniques (e.g., time trade-off, standard gamble, or the visual analog scale). A narrative synthesis of articles was undertaken and the results related to mental health summarized.A total of 103 articles were finally included, from which 742 utility values were extracted. Sixty-nine utility values related to mental health and behavioral disorders were extracted from 12 studies. The most widely used tool was the E5-QD questionnaire. Most of the excluded articles evaluated quality of life but did not provide an estimation of utilities.This review adds value to research on utilities in Spain by gathering values to be included in economic evaluations, as well as by identifying research gaps in this field. The utility values related to mental health identified in this study are similar to those reported in international publications.

This project supports the initiative promoted by the Spanish National Health System to provide informational materials, in printed or interactive format, to encourage public participation in decision making and healthcare. We present the newly created PyDEsalud.com, a web platform aimed at people with chronic diseases with a high socioeconomic impact, such as breast cancer, depression, and diabetes. This platform uses scientific methodology and contains three information service modules (Patients' experiences, Shared decision making, and Research needs), aimed at promoting health education for patients and families.

ResumenEste proyecto apoya la iniciativa, promovida por el Sistema Nacional de Salud en España, de facilitar materiales informativos, en formato impreso o interactivo, que impulsen la participación ciudadana en las decisiones y los cuidados de salud. Se presenta la recientemente creada Plataforma Web PyDEsalud.com, dirigida a personas afectadas por enfermedades crónicas de gran impacto socioeconómico, como son el cáncer de mama, la depresión o la diabetes. Siguiendo una metodología científica de trabajo, esta Plataforma incluye tres módulos de servicios informativos (Experiencias de pacientes, Toma de decisiones compartida y Necesidades de investigación), dirigidos a promocionar la educación sanitaria de pacientes y familiares.AbstractThis project supports the initiative promoted by the Spanish National Health System to provide informational materials, in printed or interactive format, to encourage public participation in decision making and healthcare. We present the newly created PyDEsalud.com, a web platform aimed at people with chronic diseases with a high socioeconomic impact, such as breast cancer, depression, and diabetes. This platform uses scientific methodology and contains three information service modules (Patients’ experiences, Shared decision making, and Research needs), aimed at promoting health education for patients and families.