Children and adolescents with rheumatologic diseases require specialized and comprehensive care, but pediatric rheumatologists and immunologists are concentrated in hospitals with specific, highcost and modern technology. Considering that some patients with juvenile idiopathic arthritis (JIA) live in rural, remote and limited accessibility areas, the use of Telemedicine (TM) can optimize diagnosis, follow-up and prognosis. Objective: Reporting 10 years of experience of a mixed care model: face-to-face and distance, using basic TM; the institutional impact, advantages, disadvantages and acceptance informed by parents and patients. Patients and Method: Exploratory, descriptive, and retrospective study with qualitative component. After the authorization of a scientific-ethics committee of the Reloncaví Health Service and the application of informed consent, a review of medical records was carried out and a qualitative survey was applied to parents and children over 14 years of age with JIA, seen between 2005-2015 in the pediatric ambulatory rheumatology polyclinic of Puerto Montt Hospital. Results: The were 27/35 participating patients with JIA attended by a trained pediatrician and assisted by distance (1,000 km) by an immunologist. The 8/35 patients did not answer by choice or change of address. The 70% of parents and patients accepted the model of care and 4% would prefer sporadic care only by specialists for diagnosis and follow-up. The number of patients transferred annually decreased from 10 to 1. The advantages of the care model outweighed the disadvantages perceived by parents and JIA patients. Conclusion: The use of TM tools in JIA decreased transfers, improved follow-up and were considered advantageous by patients and their parents. 60ORIGINAL ARTICLE Telemedicine -AS. Strickler et al
180 Background: Caregivers of cancer patients often face significant physical, social, and emotional distress. There has been limited research on the association between Latino Caregivers’ spirituality/religiosity, meaning, and spiritual pain. Methods: We interviewed 336 Latino Caregivers of patients at Palliative Care clinics in Chile, Guatemala, and the US. Five open-ended questions were asked about spirituality, religion, meaning, and spiritual pain. Answers were transcribed and data analyzed. The analytic framework was based on an interpretive phenomenological analysis. Initial themes were grouped into themes, connections between themes were developed until a thematic rationale was achieved. Results: Latino caregivers’spirituality and religious beliefs were described as an anchor during the painful witnessing of a loved-ones’suffering. Main themes emerged about relationships, inner strength, hope, and acceptance/reconciliation. It was reported as an integrative force to help them to cultivate hope and love walking through their love one’s illness and their journey as caregivers. They expressed meaning as a manifestation of spirituality together with their love to others(spouse, family, others). The presence of Spiritual Pain was common and manifested as suffering and potential loss of loved ones, and broken relationship with Higher Power, that triggered a profound experience of their own pain(both spiritual and emotional) and their own quality of life. This was expressed in physical terms such as “heartache” and “soul ache.” Through discernment, prayer, and relationships with loved-ones, spirituality was integrated as a healing force during the caregiver journey. Spirituality was reported as a substance of hope weaved into an integrative process, as caregivers reconciled the tension of faith with sorrow. Conclusions: Spirituality and religious beliefs are reported as fundamental for Latino Caregivers. Despite these elements, Spiritual Pain is common and affects all aspects of their humanity. Most of them experienced a reconciliation experience with the broken relationships with themselves, with others or with Higher Power.
M. Grez, M. Gandarillas, F. González, and E. Vargas-Bello-Pérez. 2016. Influence of a spray-dried fat enriched with EPA and DHA on the fatty acid composition of sow milk. Cien. Inv. Agr. 43(3):347-355. Supplementation with eicosapentaenoic and docosahexaenoic acids (EPA and DHA) through the addition of fish oils to mammal diets during lactation benefits milk production, litter growth and the litter immune system, but there is little evidence supporting the use of oils that have been dried using a spray-drying method designed to cool and crystalize fat particles. The objective of this study was to evaluate the effect of a spray-dried dietary fat enriched with EPA and DHA on the fatty acid composition of sow milk. Fifteen pregnant sows were assigned to three dietary treatments from day 100 of gestation until weaning (day 28). Control sows (CONT) were fed an unsupplemented basal diet, and supplemented sows were fed the basal diet plus 20 g (FOPF20) or 40 g (FOPF40) of a spray-dried powdered fat enriched with EPA and DHA. Milk and colostrum compositions and milk yield were similar among diets, and the main milk fatty acids (FA) were C14:0, C16:0, C18:0, C18:1 n-9 and C18:2 n-6. Supplementation with EPA and DHA (FOPF20 and FOPF40) decreased the saturated FA contents and increased the amount of polyunsaturated FA. In summary, the results indicated that supplementing sow diets with EPA and DHA could decrease the saturated fatty acid content and increase the polyunsaturated fatty acid content of milk.
Al menos 50% de los pacientes pediátricos portadores de artritis idiopática juvenil (AIJ) continuará control en reumatología adulto. La clasificación de la Liga Internacional de Asociaciones de Reumatología (ILAR) vigente, actualmente en revisión, difiere de la clasificación de las artritis inflamatorias del adulto. Se ha reportado cambios de categoría en 10,8% de los pacientes durante el seguimiento.Objetivo: Analizar los pacientes con AIJ seguidos al menos 7 años para objetivar cambios de diagnóstico en la transición, e identificar factores de mal pronóstico funcional.Pacientes y Método: Estudio retrospectivo en base a registros clínicos. Se incluyó a la totalidad de los pacientes con AIJ controlados en policlínico pediátrico del Hospital de Puerto Montt entre el año 2005 y 2017, que cumplieron siete o más años de seguimiento. Se realizó análisis descriptivo en base a variables clínicas: categoría diagnóstica, tiempo de evolución al diagnóstico, actividad clínica y serológica, y tiempo de evolución al inicio de la terapia farmacológica.Resultados: Se evaluaron 18 pacientes, 3 Oligo-articular (OA) persistente, 1 OA extendida, 4 Poli-articular (PA) factor reumatoide (FR) negativo, 4 PA FR positivo, 5 Sistémicas, 1 Psoriática, todos con seguimiento mayor a 7 años. Once de 18 niños fueron transferidos a adultos. Tres de 11 cambiaron de diagnóstico a Artritis Reumatoide (AR) más otra enfermedad autoinmune: Síndrome de Sjögren + Lupus eritematoso sistémico, Púrpura trombocitopénico inmune, Enfermedad autoinmune no clasificada y cinco de 11 niños de categoría ILAR: OA a Artritis reumatoide juvenil, OA extendida a PA FR negativo, 3 Sistémicas a PA FR negativo. Edad de inicio, formas poli-articulares, retrasos en diagnóstico y comienzo de terapia se asociaron a secuelas e inflamación persistente.Conclusiones: Ocho de once pacientes transferidos cambiaron denominación diagnóstica y/o presentaron otras enfermedades autoinmunes. Algunos factores de mal pronóstico deben mejorar.
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