6 research outputs found

    Medical consultation in ulcerative colitis: Key elements for improvement

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    Medical consultation; Shared decision making; Ulcerative colitisConsulta médica; Toma de decisiones compartida; Colitis ulcerosaConsulta mèdica; Presa de decisions compartida; Colitis ulcerosaUlcerative colitis (UC) is a chronic inflammatory disease with a high impact. In order to improve patient outcomes, the clinician-patient relationship in daily practice is critical. Clinical guidelines provide a framework for UC diagnosis and treatment. However, standard procedures and the medical content focused upon medical consultations in UC patients has not yet been defined. Moreover, UC is a complex disease, given that patient characteristics and patient needs have been proven to vary during clinical consultation since establishing the diagnosis and upon the course of the disease. In this article, we have discussed the key elements and specific objectives to consider in medical consultation, such as diagnosis, first visits, follow-up visits, active disease patients, patients on topical therapies, new treatment initiation, refractory patients, extra-intestinal manifestations, as well as challenging situations. The key elements have been mentioned to comprise effective communication techniques, motivational interviewing (MI), as well as information and educational aspects, or organizational issues. The key elements to be implemented in daily practice were reported to comprise several general principles like duly prepared consultations, in addition to honesty and empathy with patients, as well as effective communication techniques, MI, information and educational points, or organizational issues. The role of other healthcare professionals such as specialized nurses, psychologists, or the use of checklists was also discussed and commented on

    Healthcare Experience and their Relationship with Demographic, Disease and Healthcare-Related Variables: A Cross-Sectional Survey of Patients with Chronic Diseases Using the IEXPAC Scale

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    Health Administration; Public Health; Quality of Life ResearchAdministración sanitaria; Salud pública; Investigación de calidad de vidaAdministració sanitària; Salut pública; Investigació sobre la qualitat de vidaBackground Patient experience is acknowledged as a principal aspect of quality healthcare delivery, and it has implications with regard to outcomes. Objectives Our objective was to evaluate the healthcare experience of patients with chronic diseases to identify patient-perceived healthcare gaps and to assess the influence of demographic and healthcare-related variables on patient experiences. Methods A cross-sectional survey was delivered to adult patients with chronic diseases: diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, inflammatory bowel disease (IBD) or rheumatic diseases. Patient experiences were assessed with the Instrument for Evaluation of the Experience of Chronic Patients (IEXPAC) questionnaire, with possible scores ranging from 0 (worst) to 10 (best experience). Results Of the 2474 patients handed the survey, 1618 returned it (response rate 65.4%). Patients identified gaps in healthcare related mainly to access to reliable information and services, interaction with other patients and continuity of healthcare after hospital discharge. The mean ± standard deviation (SD) IEXPAC score was 6.0 ± 1.9 and was higher for patients with HIV (6.6 ± 1.7) than for those with rheumatic disease (5.5 ± 2.0), IBD (5.9 ± 2.0) or DM (5.9 ± 1.9) (p < 0.001). In multivariate models, better overall IEXPAC experience was associated with follow-up by the same physician, follow-up by a nurse, receiving healthcare support from others and treatment with subcutaneous or intravenous drugs. The multivariate model that confirmed patients with HIV or DM had better experience than did those with rheumatic diseases. Conclusions Through IEXPAC, patients identified aspects for healthcare quality improvements and circumstances associated with better experience, which may permit greater redirection of healthcare toward patient-centered goals while facilitating improvements in social care and long-term healthcare quality.This project was funded by Merck Sharp and Dohme, Spain

    The experience of inflammatory bowel disease patients with healthcare: A survey with the IEXPAC instrument

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    Inflammatory bowel disease; Patients experience; Chronic diseaseMalaltia intestinal inflamatòria; Experiència dels pacients; Malalties cròniquesEnfermedad intestinal inflamatoria; Experiencia de los pacientes; Enfermedades crónicasTo assess inflammatory bowel disease (IBD) patients' experience of chronic illness care and the relationship with demographic and healthcare-related characteristics.This cross-sectional survey used the Instrument to Evaluate the EXperience of PAtients with Chronic diseases (IEXPAC) questionnaire to identify parameters associated with a better healthcare experience for IBD patients. IEXPAC questionnaire responses are grouped into 3 factors - productive interactions, new relational model, and patient self-management, scoring from 0 (worst) to 10 (best experience). Scores were analyzed by bivariate comparisons and multiple linear regression models.Surveys were returned by 341 of 575 patients (59.3%, mean age 46.8 (12.9) years, 48.2% women). Mean (SD) IEXPAC score was 5.9 (2.0); scores were higher for the productive interactions (7.7) and patient self-management factors (6.7) and much lower for the new relational model factor (2.2). Follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines were associated with higher (better) overall patient experience score, and higher productive interactions and self-management factor scores. A higher productive interactions score was also associated with patients receiving medication subcutaneously or intravenously. Higher new relational model scores were associated with follow-up by a nurse, affiliation to a patients' association, receiving help from others for healthcare, a lower number of medicines and a higher educational level.In patients with IBD, a better overall patient experience was associated with follow-up by a nurse, being seen by the same physician, and being treated with a lower number of medicines

    National survey on the experiences of people with celiac disease in Spain. The CELIAC-SPAIN project.

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    coeliac disease (CD) is well known, but not so its impact on the patient's life. to determine the impact of CD in the life of celiac patients on different aspects such as diagnosis, follow-up and treatment. associates of FACE participated in an auto-administered, telematic survey conducted between May and July, 2019. Three participant profiles have been defined: adults diagnosed in adulthood, adults diagnosed in childhood and parents/guardians of celiac children. 540 surveys (343 adult celiacs, 58 celiacs from children and 139 parents/guardians) from all autonomous communities have been included. In the diagnostic process highlights the diagnostic delay (up to 2 years) and the limitations to screening of family members. After diagnosis, about 20 % of adults do not refer to follow any control. Having a CD generates different reactions, but concern and quality of life limitation are very common. As for the gluten-free diet, 90 % of patients referred good adherence to treatment, which is accompanied by improved symptoms and weight gain. Diet tracking limits patients' daily lives. Gluten-free manufactured products are considered expensive, with unclear and unappealing labeling. the results of the "CELIAC-SPAIN" project show that there are still many aspects to be improved in CD, both diagnosis and follow-up and in facilitating access to gluten-free products

    Managing iron deficiency and iron deficiency anemia in inflammatory bowel disease. The results of the "Gestiona hierro-EII" survey.

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    iron deficiency anemia is a common and very relevant manifestation of inflammatory bowel disease (IBD). Although clinical practice guidelines have been published and updated on this subject, the management in the daily practice of this complication is far from optimal. to determine the actual management, needs and limitations of anemia in IBD by means of a survey of gastroenterology specialists. a self-administered telematic survey was carried out between April and May 2017 and was sent to SEPD members. The survey included four sections: participant demographics, monitoring, treatment and limitations/needs. a total of 122 evaluable surveys were received from all Spanish autonomous communities. Iron deficiency anemia is considered as a frequent manifestation of IBD and is monitored in all patients via the measurement of hemoglobin and ferritin. In the case of anemia, the survey respondents found it necessary to rule out the presence of IBD activity. However, only 14.8% prescribed intravenous iron when IBD was active. The required dose of intravenous iron is mainly calculated according to patient needs but only 33.1% of clinicians infused doses of 1 g or more. the "Gestiona Hierro EII" survey on the management of anemia in IBD demonstrated a high quality of care, even though some aspects need to be improved. These included the prescription of intravenous iron for patients with disease activity, the use of high-dose intravenous iron and the implementation of algorithms into clinical practice

    Manejo del déficit de hierro y la anemia ferropénica en la enfermedad inflamatoria intestinal. Resultados de la encuesta "Gestiona Hierro-EII"

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    RESUMEN Introducción: la anemia ferropénica es una manifestación común y muy relevante de la enfermedad inflamatoria intestinal (EII). Aunque se han publicado guías de práctica clínica y puestas al día sobre el tema, el manejo práctico de esta complicación dista de ser óptimo. Objetivo: conocer el manejo real, las necesidades y las limitaciones de la anemia en la EII mediante una encuesta a especialistas de digestivo. Material y métodos: encuesta telemática autoadministrada, realizada entre abril- mayo 2017, y dirigida a socios de la SEPD con actividad clínica. La encuesta incluye cuatro apartados: demografía de los participantes, monitorización, tratamiento y limitaciones/necesidades. Resultados: ciento veintidós encuestas evaluables procedentes de todas las comunidades autónomas. La anemia ferropénica se considera una manifestación frecuente de la EII y que se monitoriza en todos los pacientes mediante determinación de la hemoglobina y la ferritina. En caso de anemia, los encuestados consideran necesario descartar la existencia de actividad de la EII, aunque solo el 14,8% indica el hierro intravenoso si la EII está activa. La dosis necesaria de hierro intravenoso es mayoritariamente calculada según las necesidades del paciente, pero solo el 33,1% utiliza dosis por infusión de 1 g o más elevadas. Conclusiones: la encuesta "Gestiona Hierro EII" sobre el manejo de la anemia en la EII demuestra una alta calidad asistencial, pero con aspectos a mejorar como la indicación de hierro intravenoso en los pacientes con actividad, el uso de hierro intravenoso de altas dosis o la aplicación de algoritmos en la práctica asistencial
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