Cuidando al final de la vida. Un programa de intervención online para familiares de pacientes oncológicos en fase paliativa / Caring the caregivers. An online psychological intervention for family caregivers of oncological palliative patients

Resumen: Objetivo: Analizar la eficacia de un programa de intervención psicológica grupal en formato online diseñado para reducir la sobrecarga y el malestar emocional de los cuidadores informales de pacientes oncológicos en fase final de vida. Método: El programa se desarrolló para cuidadores principales de pacientes oncológicos en situación de enfermedad avanzada, con pronóstico de vida inferior a 6 meses. La intervención consistió en cuatro sesiones semanales. Los instrumentos de evaluación fueron la Escala de Detección de Malestar Emocional del Cuidador Principal y la Escala Zarit Reducida y se aplicaron al inicio y al final del programa. Además, se categorizaron las principales preocupaciones de los cuidadores a través de la Escala de Detección del Malestar del Cuidador Principal. Se utilizaron estadísticos descriptivos y t de Student. Resultados: En el estudio participaron 38 familiares de los cuales el 81,6% eran mujeres. En cuanto el grado de parentesco, el 44,7% eran descendientes del paciente. El malestar emocional se redujo significativamente después de la intervención. La incertidumbre se mantuvo como principal preocupación en ambos momentos de medida. Antes del programa, la segunda preocupación más frecuente fue el sufrimiento por el ser querido enfermo, mientras que después de la intervención fue la preocupación por el sufrimiento de otros miembros de la familia. Conclusiones: La realización de este programa de intervención psicológica grupal online demostró ser efectiva para reducir el malestar emocional en los cuidadores principales de pacientes oncológicos al final de la vida. La incertidumbre fue una preocupación constante a lo largo del programa en los familiares. (AU)

Abstract:Aim: analyze the effectiveness of an online delivered psychological intervention program for oncological palliative caregivers in order to reduce the distress and caregiver burden. Methods: The program was developed for primary caregivers of advanced cancer patients, with a life expectancy of less than 6 months. The intervention consisted of 4 weekly sessions. The assessment instruments were the Caregiver Emotional Distress Detection Scale and the Zarit’s Reduced Scale and were applied at the beginning and end of the program. In addition, the main worries of the caregivers were categorized by the Caregiver Emotional Distress Detection Scale. Descriptive statistics and Student’s t were used. Results: 38 caregivers enrolled in intervention, 81.6% of whom were women. Regarding the degree of kinship, 44.7% were descendants of the patient. The distress was significantly reduced after the intervention. Uncertainty remained the main worry at both moments of measurement. Before the program, the second most frequent worry was the suffering of the patient, while after the intervention it was worries about the suffering of other family members. Conclusions: Carrying out this online group psychological intervention program proved to be effective in reducing emotional distress in the main caregivers of cancer patients at the end of life. Uncertainty was a constant concern throughout the program in the relatives. (AU)

Sobrecarga, afrontamiento y soporte social en progenitores de niños con cáncer / Caregiver burden, coping and social support in parents of children with cancer

Objetivo: Analizar la relación entre las estrategias de afrontamiento, el soporte social, las características de padres cuidadores migrantes y sus niños con cáncer en la sobrecarga del cuidador de dichos padres. Método: Participaron 82 cuidadores (67 madres y 15 padres) en condición de bajo recursos que residían en albergues para niños con cáncer y sus cuidadores, quienes migraron a la ciudad para recibir el tratamiento. Se utilizó la Escala de Sobrecarga de Zarit (Zarit et al., 1980), el Inventario de Afrontamiento COPE (Carver et al., 1989) y el Cuestionario MOS de apoyo social (Sherbourne y Stewart, 1991). Resultado: Se realizaron dos modelos de regresión para evaluar el impacto de las variables demográficas y psicológicas en la carga del cuidador, el primer modelo involucra la escala global de apoyo social (R2 ajustado=,43, F=9,73, p<,001) y el segundo las escalas específicas (R2 ajustado=,45, F=8,23, p<,001). Los resultados evidencian el rol predictivo de las estrategias de afrontamiento como la aceptación, la reinterpretación positiva y enfocar y liberar emociones; el soporte social global y de tipo afectivo; y características sociodemográficas como el nivel de instrucción del progenitor y la edad del hijo en la sobrecarga del cuidador. La mayoría de estas variables tienen una relación inversa con la sobrecarga. Conclusiones: Los resultados del estudio subrayan la importancia de investigar la sobrecarga del cuidador en situación de vulnerabilidad. Además, el estudio destaca la relevancia de factores como las estrategias de afrontamiento y el apoyo social, que desempeñan un papel clave en la sobrecarga del cuidador.(AU)

Aim: To analyze the relationship between coping strategies, social support, characteristics of migrant parent caregivers and their children with cancer on caregiver overload of such parents. Zarit Burden Interview (Zarit et al., 1980), the COPE Inventory (Carver et al., 1989) and the MOS Social Support Questionnaire (Sherbourne y Stewart, 1991) were used. Method: Eighty-two caregivers (67 mothers and 15 fathers) residing in shelters for children with cancer and their caregivers, who migrated to the city to receive treatment, participated in this study. Results: Two regression models were performed to evaluate the impact of demographic and psychological variables on caregiver burden, the first model involves the global social support scale (R2 adjusted=.43, F=9.73, p<.001) and the second the specific scales (R2 adjusted=.45, F=8.23, p<.001). Results: There is evidence the predictive role of coping strategies such as acceptance, positive reinterpretation and growth, focus and venting of emotions; global and affective social support; and sociodemographic characteristics such as parental level of education and child age in caregiver burden. Most of these variables have an inverse relationship with caregiver burden. Conclusions: The results of the study underline the crucial importance of investigating caregiver burden in the context of vulnerability. In addition, the study highlights the importance of factors such as coping strategies and social support, which play a key role in influencing caregiver burden.(AU)

Consensus on the approach to hydrosaline overload in acute heart failure. SEMI/SEC/S.E.N. recommendations.

Most of the signs and symptoms of heart failure can be explained by fluid overload, which is also related to disease progression. Fluid overload is a complex phenomenon that extends beyond increased intravascular pressures and poses challenges for accurate diagnosis and effective treatment. Current recommendations advise a multiparametric approach, including clinical data (symptoms/signs), imaging tests, and biomarkers. This article proposes a practical therapeutic approach to managing hydrosaline overload in heart failure in both inpatient and outpatient settings. This document is an initiative of the Spanish Society of Internal Medicine (SEMI) in collaboration with the Spanish Society of Cardiology (SEC) and the Spanish Society of Nephrology (S.E.N.).

The burden of disease and quality of life in patients with acute hepatic porphyria: COPHASE study / Carga de la enfermedad y calidad de vida en pacientes con porfiria hepática aguda: estudio COPHASE

Background: Acute hepatic porphyria (AHP) comprises a group of rare genetic diseases characterized by neurovisceral crises that are manifested by abdominal pain and neurological and/or psychological symptoms that interfere with the ability to lead a normal life. Our objective was to determine the burden of the disease in one year and the health-related quality of life (HRQoL) in patients with AHP. Results: 28 patients were analyzed. The mean age was 36.6±10.2 years, 89.3% were women, and the average number of crises was 1.9±1.5. The average annual cost per patient was €38,255.40. 80.2% of the costs was direct medical costs, 17.5% was associated with loss of productivity and 2.3% was direct non-medical costs. 85.9% of the total cost corresponded to the crises. The intercrisis period accounted for the remaining 14.1%. The global index of the EQ-5D-5L (HRQoL) was 0.75±0.24. The dimensions of pain/discomfort, anxiety/depression and daily activities were the most affected. Leisure, travel/vacations and household activities were the most affected daily activities. 53.6% of patients required a caregiver due to AHP. 92.9% did not present overload and 7.1% presented extreme overload. Conclusions: Patients with AHP are associated with a high economic impact and an affected HRQoL in the pain/discomfort dimension, with a negative impact on the performance of daily activities and a risk of psychiatric diseases.(AU)

Antecedentes: La porfiria hepática aguda (PHA) comprende un grupo de enfermedades genéticas raras caracterizadas por crisis neuroviscerales que se manifiestan por dolor abdominal y síntomas neurológicos y/o psicológicos que interfieren en la capacidad de llevar una vida normal. Nuestro objetivo fue determinar la carga de la enfermedad en un año y la calidad de vida relacionada con la salud (CVRS) en pacientes con PHA. Resultados: Se analizaron 28 pacientes. La edad media fue de 36,6±10,2 años, el 89,3% eran mujeres y la media de crisis fue de 1,9±1,5. El coste medio anual por paciente fue de 38.255,40€. El 80,2% de los costes fueron costes médicos directos, el 17,5% estuvieron asociados a pérdida de productividad y el 2,3% fueron costes directos no médicos. El 85,9% del coste total correspondió a las crisis. El período entre crisis representó el 14,1% restante. El índice global del EQ-5D-5L (HRQoL) fue de 0,751±0,24. Las dimensiones de dolor/malestar, ansiedad/depresión y actividades cotidianas fueron las más afectadas. Ocio, viajes/vacaciones y actividades del hogar fueron las actividades diarias más afectadas. El 53,6% de los pacientes requirieron un cuidador debido a la PHA. El 92,9% no presentaron sobrecarga y el 7,1% presentaron sobrecarga extrema. Conclusiones: Los pacientes con PHA se asocian con un alto impacto económico y una CVRS afectada en la dimensión dolor/malestar, con impacto negativo en el desempeño de las actividades diarias y riesgo de enfermedades psiquiátricas.(AU)

Family burden after critical illness: the forgotten caregivers / La sobrecarga familiar tras una enfermedad crítica: los cuidadores olvidados

Objective To determine the incidence of primary caregiver burden in a cohort of family members of critically ill patients admitted to ICU and to identify risk factors related to its development in both the patient and the family member. Design Prospective observational cohort study was conducted for 24 months. Setting Hospital Universitario Clínico San Cecilio, Granada. Patients The sample was the primary caregivers of all patients with risk factors for development of PICS (Post-Intensive Care Syndrome). Interventions The follow-up protocol consisted of evaluation 3 months after discharge from the ICU in a specific consultation. Main variables of interest The scales used in patients were Barthel, SF-12, HADS, Pfeiffer, IES-6 and in relatives the Apgar and Zarit. Results A total of 93 patients and caregivers were included in the follow-up. 15 relatives did not complete the follow-up questionnaires and were excluded from the study. The incidence of PICS-F (Family Post Intensive Care Syndrome) defined by the presence of primary caregiver burden in our cohort of patients is 34.6% (n=27), 95% CI 25.0−45.7. The risk factors for the development of caregiver burden are the presence of physical impairment, anxiety or post-traumatic stress in the patient, with no relationship found with the characteristics studied in the family member. Conclusions One out of 3 relatives of patients with risk factors for the development of PICS presents at 3 months caregiver burden. This is related to factors dependent on the patient's state of health. (AU)

Objetivo Determinar la incidencia de la sobrecarga del cuidador principal en una cohorte de familiares de pacientes críticos ingresados en UCI e identificar los factores de riesgo relacionados con su desarrollo tanto en el paciente como en el familiar. Diseño Estudio de cohortes observacional prospectivo durante 24 meses. Ámbito Hospital Universitario Clínico San Cecilio de Granada. Pacientes La muestra estuvo compuesta por los cuidadores principales de todos los pacientes con factores de riesgo para el desarrollo de SPCI (Síndrome Post-Cuidados Intensivos). Intervenciones El protocolo de seguimiento consistió en la evaluación a los 3 meses del alta de la UCI en una consulta específica. Variables de interés principales Las escalas utilizadas fueron Barthel, SF-12, HADS, Pfeiffer, IES-6, Apgar y Zarit. Resultados Un total de 93 pacientes y cuidadores fueron incluidos en el seguimiento. 15 cuidadores no completaron los cuestionarios de seguimiento y fueron excluidos del estudio. La incidencia de PICS-F (Síndrome Post-Cuidados Intensivos Familiar) definido por la presencia de sobrecarga del cuidador en nuestra cohorte es del 34,6% (n=27), IC 95% 25,0–45,7. Los factores de riesgo para el desarrollo del mismo son la presencia de deterioro físico, ansiedad o estrés postraumático en el paciente, no encontrándose relación con las características estudiadas en el familiar. Conclusiones Uno de cada 3 familiares de pacientes con factores de riesgo para el desarrollo de SPCI presenta a los 3 meses sobrecarga del cuidador, relacionándose con factores dependientes del estado de salud del paciente. (AU)

Family burden after critical illness: the forgotten caregivers.

OBJECTIVE: To determine the incidence of primary caregiver burden in a cohort of family members of critically ill patients admitted to ICU and to identify risk factors related to its development in both the patient and the family member. DESIGN: Prospective observational cohort study was conducted for 24 months. SETTING: Hospital Universitario Clínico San Cecilio, Granada. PATIENTS: The sample was the primary caregivers of all patients with risk factors for development of PICS (Post-Intensive Care Syndrome). INTERVENTIONS: The follow-up protocol consisted of evaluation 3 months after discharge from the ICU in a specific consultation. MAIN VARIABLES OF INTEREST: The scales used in patients were Barthel, SF-12, HADS, Pfeiffer, IES-6 and in relatives the Apgar and Zarit. RESULTS: A total of 93 patients and caregivers were included in the follow-up. 15 relatives did not complete the follow-up questionnaires and were excluded from the study. The incidence of PICS-F (Family Post Intensive Care Syndrome) defined by the presence of primary caregiver burden in our cohort of patients is 34.6% (n=27), 95% CI 25.0-45.7. The risk factors for the development of caregiver burden are the presence of physical impairment, anxiety or post-traumatic stress in the patient, with no relationship found with the characteristics studied in the family member. CONCLUSIONS: One out of 3 relatives of patients with risk factors for the development of PICS presents at 3 months caregiver burden. This is related to factors dependent on the patient's state of health.

The burden of disease and quality of life in patients with acute hepatic porphyria: COPHASE study.

BACKGROUND: Acute hepatic porphyria (AHP) comprises a group of rare genetic diseases characterized by neurovisceral crises that are manifested by abdominal pain and neurological and/or psychological symptoms that interfere with the ability to lead a normal life. Our objective was to determine the burden of the disease in one year and the health-related quality of life (HRQoL) in patients with AHP. RESULTS: 28 patients were analyzed. The mean age was 36.6±10.2 years, 89.3% were women, and the average number of crises was 1.9±1.5. The average annual cost per patient was €38,255.40. 80.2% of the costs was direct medical costs, 17.5% was associated with loss of productivity and 2.3% was direct non-medical costs. 85.9% of the total cost corresponded to the crises. The intercrisis period accounted for the remaining 14.1%. The global index of the EQ-5D-5L (HRQoL) was 0.75±0.24. The dimensions of pain/discomfort, anxiety/depression and daily activities were the most affected. Leisure, travel/vacations and household activities were the most affected daily activities. 53.6% of patients required a caregiver due to AHP. 92.9% did not present overload and 7.1% presented extreme overload. CONCLUSIONS: Patients with AHP are associated with a high economic impact and an affected HRQoL in the pain/discomfort dimension, with a negative impact on the performance of daily activities and a risk of psychiatric diseases.

Mielopatía cervical por déficit de cobre secundario a sobrecarga de zinc dental. A propósito de un caso / Cervical myelopathy due to copper deficiency secondary to dental zinc overload: A case report

Se presenta el caso de un varón de 68años con un cuadro progresivo de hipoestesia braquial y crural con ataxia de la marcha, sugiriendo una mielopatía subaguda de cordones posteriores, demostrada en RM. Tras analítica sanguínea se diagnostica de déficit de cobre tras intoxicación por zinc, secundario al uso de un pegamento para dentaduras postizas que contenía zinc. Se inició tratamiento con cobre, retirándose el pegamento dental. Se inició tratamiento rehabilitador con fisioterapia, hidroterapia y terapia ocupacional. Se consiguió una mejoría funcional, pasando de una lesión medular ASIAD nivel C4 a otra ASIAD nivel C7. Deberían estudiarse los niveles de cobre en todas aquellas mielopatías no compresivas, de aparición subaguda, si existe una clara afectación de los cordones posteriores. El déficit de cobre en análisis establecería el diagnóstico. El tratamiento rehabilitador, el aporte de cobre suplementario y la retirada del zinc es fundamental para la prevención de daño neurológico irreversible.(AU)

We present the case of a 68-year-old man with progressive brachial and crural hypoaesthesia with gait ataxia suggesting subacute myelopathy of the posterior cords, demonstrated by MRI. After blood tests, a diagnosis of copper deficiency was made following zinc intoxication, secondary to the use of denture glue containing zinc. Treatment was started with copper and the dental glue was removed. Rehabilitation treatment was started with physiotherapy, hydrotherapy and occupational therapy. Functional improvement was achieved, going from an ASIAD level C4 to an ASIAD level C7 spinal cord injury. Copper levels should be studied in all non-compressive myelopathies of subacute onset if there is clear involvement of the posterior cords. Copper deficiency in analysis would establish the diagnosis. Rehabilitative treatment, supplementary copper supplementation and zinc withdrawal are essential to prevent irreversible neurological damage.(AU)

Instrumentos para la medición de sobrecarga del cuidador en pacientes con enfermedad crónica: revisión psicométrica

Introducción: Los cuidadores de pacientes con enfermedad crónica experimentan sobrecarga en actividades de cuidado. Existen diferentes instrumentos que miden la sobrecarga, en Latinoamérica se han validado diferentes instrumentos. Objetivo: Evaluar la calidad metodológica de las propiedades psicométricas de los instrumentos que miden la sobrecarga del cuidador en el contexto latinoamericano. Metodología: Revisión sistemática psicométrica. La búsqueda incluyó la combinación de 3 aspectos: estudios de validación; idioma: español, portugués o inglés, lugar de validación: Latinoamérica. Resultados: Un total de 24 artículos se identificaron e incluían 10 instrumentos. El idioma de los artículos con mayor representación fue el español (n = 15). El país con mayor número de estudios de validación fue Brasil (n = 15). El instrumento con mayor número de validaciones fue la Encuesta de Zarit (n = 11). Conclusión: Los instrumentos identificados cuentan con buena calidad metodológica, sin embargo, se requieren futuros estudios que evalúen las propiedades psicométricas faltantes, en especial la validez de contenido.

Introduction: Caregivers of patients with chronic disease experience overload when carrying out continuous care tasks. In the world there are different instruments that measure this overload, in the Latin American context different instruments have been validated. Objetive: To evaluate the methodological quality of the psychometric properties of the instruments that measure caregiver burden in the Latin American. Methodology: Systematic psychometric review. The search included the combination of 3 aspects: validation studies; language: Spanish, Portuguese or English, and place of validation: Latin American. Results: A total of 24 articles were identified and included 10 instruments. The language of the articles with the highest representation was Spanish (n = 15). The country with the highest number of validation studies was Brazil (n = 15). The instrument with the highest number of validations was the Zarit Survey (n = 11). Conclusion: The identified instruments have methodological quality; however, future research is necessary to evaluate the missing psychometric properties, especially content validity

Sobrecarga e ansiedade em familiares de utentes instuticionalizados em ERPI ­ região de Bragança / Overload and anxiety in family members of users institutionalised in ERPI - Bragança region

O envelhecimento e as doenças crónicas são, na sua maioria, pela dependência que causam, a principal razão da institucionalização. Os cuidadores, experienciam um desgaste acentuado ao cuidar um familiar com elevado grau de dependência e a sobrecarga, física e mental, faz-se sentir na sua maioria. São poucos os estudos na área dos familiares de Utentes Institucionalizados. De uma forma geral, a avaliação das varáveis em causa ­ sobrecarga e ansiedade - está direcionada para os cuidadores formais e informais no domicílio ou em contexto de internamento temporário. Pretende- se, com este estudo, caracterizar e avaliar a sobrecarga e a ansiedade em familiares de Utentes Institucionalizados, correlacionando-os com os dados sócio-demográficos. Trata-se de um estudo quantitativo, observacional, analítico e transversal. Para a colheita de dados foram utilizados os seguintes instrumentos: Questionário Sociodemográfico, a Escala de Sobrecarga do Cuidador de Zarit (Sequeira, 2010); a Escala de Ansiedade e Depressão clínica ­ HADS (Pais-Ribeiro, 2007); e Escala de Avaliação da Sobrecarga para familiares de pessoas institucionalizadas em estruturas residenciais para idosos de Fukahori - (CBS-FNH) (Obanos-Martell, et al, 2016). A amostra deste estudo é constituída por 138 familiares de pessoas institucionalizadas em Estruturas Residenciais para Idosos do concelho de Bragança. Destacamos que os inquiridos são maioritariamente do sexo feminino (71%), com idades compreendidas entre 50 e 59 anos (54%). Temos familiares casados ou em união de facto a prevalecer (76,1%). As habilitações literárias que predominam na amostra em estudo são o ensino secundário (39%) e o ensino superior (36%), encontrando-se cerca de 67% a laborar em termos profissionais. Relativamente ao grau de parentesco com a pessoa institucionalizada a maioria dos inquiridos é filho(a) (67%), seguindo-se o conjugue (12%). No que diz respeito à sobrecarga - utilizando a escala de Sobrecarga de Zarit - observou-se que mais de metade dos inquiridos não apresentam sobrecarga (54%). No entanto, com base na escala da sobrecarga direcionada a familiares de Fukahori, apurou- se que a sobrecarga se faz sentir, de forma acentuada, em duas dimensões, a "culpa" e "luto e perdas antecipados". Relativamente à ansiedade percebemos que 46% dos familiares não apresentam ansiedade. Isto revela que é a nível da sobrecarga que os familiares necessitam de maior atenção por parte das estruturas residenciais. Na integração e ao longo da estadia na residência, o papel dos intervenientes, deve ser dotar os familiares com estratégias de coping para os ajudar na adaptação a estes sentimentos, apaziguando-os.

Aging and chronic diseases are, for the most part, the main reason for institutionalization due to the dependence they cause. Caregivers experience severe exhaustion when caring for a family member with a high degree of dependence and the physical and mental overload is felt in the majority of cases. There are few studies in the area of family members of Institutionalized Users. In general, the assessment of the variables in question - overload and anxiety - is aimed at formal and informal caregivers at home or in the context of temporary hospitalization. The aim of this study is to characterize and evaluate the burden and anxiety in family members of Institutionalized Users, correlating them with socio-demographic data. This is a quantitative, observational, analytical and cross-sectional study. The following instruments were used to collect data: Sociodemographic Questionnaire, the Zarit Caregiver Burden Scale (Sequeira, 2010); the Clinical Anxiety and Depression Scale ­ HADS (Pais-Ribeiro, 2007); and Burden Assessment Scale for family members of people institutionalized in residential facilities for the elderly in Fukahori - (CBS-FNH) (Obanos-Martell, et al, 2016). The sample of this study consists of 138 family members of people institutionalized in Residential Structures for the Elderly in the municipality of Bragança. We highlight that the respondents are mostly female (71%), aged between 50 and 59 years old (54%). We have family members who are married or in a civil union prevailing (76.1%). The educational qualifications that predominate in the sample under study are secondary education (39%) and higher education (36%), with around 67% working professionally. Regarding the degree of kinship with the institutionalized person, the majority of respondents are children (67%), followed by their spouse (12%). With regard to overload - using the Zarit Overload scale - it was observed that more than half of respondents do not have overload (54%). However, based on the scale of the burden directed at Fukahori's family members, it was found that the burden is felt, in a pronounced way, in two dimensions, "guilt" and "anticipated grief and losses". Regarding anxiety, we noticed that 46% of family members do not have anxiety. This reveals that it is at the level of overload that family members need greater attention from residential structures. During integration and throughout the stay at the residence, the role of those involved should be to provide family members with coping strategies to help them adapt to these feelings, appeasing them.

Habilidades de desempeño ocupacional en la enfermedad de Parkinson: relación con la calidad de vida relacionada con la salud y la carga del cuidador / Occupational performance skills in Parkinson’s disease: relationship with health-related quality of life and caregiver burden

Introducción: La progresión de la enfermedad de Parkinson (EP) da lugar a una pérdida de la capacidad para realizar actividades de la vida diaria y de la calidad de vida relacionada con la salud. Los objetivos de este estudio fueron establecer las relaciones entre las habilidades de desempeño ocupacional y la calidad de vida relacionada con la salud, y el grado de carga del cuidador en pacientes con EP. Pacientes y métodos: Participaron en el estudio 49 sujetos en diferentes estadios de EP según la escala de Hoehn y Yahr. Los pacientes fueron evaluados usando el cuestionario de la enfermedad de Parkinson (PDQ-39), el EuroQoL (EQ-5D), la evaluación de las habilidades motoras y de procesamiento (AMPS), y la entrevista de Zarit sobre la carga del cuidador (ZCBI). Resultados: Se encontraron fuertes correlaciones entre la sección de habilidades motoras de la AMPS y el PDQ-39 (r = –0,76; p = 0,001), y los cuestionarios EQ-5D (r = 0,72; p = 0,001), mientras que se encontraron correlaciones moderadas con las habilidades de procesamiento. Las habilidades de procesamiento de la AMPS se correlacionaron moderadamente con la movilidad y las actividades de la vida diaria. La ZCBI sólo se correlacionó débilmente con las habilidades motoras de la AMPS (r = –0,34; p = 0,02). Conclusión: Las puntuaciones decrecientes en la AMPS están estrechamente relacionadas con la pérdida de calidad de vida relacionada con la salud en pacientes con EP y, en menor medida, con el grado de carga del cuidador.(AU)

Introduction: The progression of Parkinson’s disease (PD) results in a loss of ability to performance activities of daily living and health-related quality of life. The objectives of this study were to establish the relations between occupational performance skills and health-related quality of life, and the degree of caregiver burden in PD patients. Patients and methods: Forty-nine patients at different stages of PD according to the Hoehn and Yahr scale participated in the study. Patients were assessed using the Parkinson’s Disease Questionnaire (PDQ-39), the EuroQoL (EQ-5D), the Assessment of Motor and Process Skills (AMPS), and the Zarit Caregiver Burden Interview (ZCBI). Results: Strong correlations were found between the motor skills section of the AMPS scale and the PDQ-39 (r = –0.76; p = 0.001), and the EQ-5D questionnaires (r = 0.72; p = 0.001), while moderate correlations were found with the process skills. AMPS process skills were moderately correlated with mobility and activities of daily living. The ZCBI was only weakly correlated with the AMPS motor skills (r = –0.34; p = 0.02). Conclusion: Declining scores on the AMPS scale are closely related to the loss of health-related quality of life in PD patients, and, to a lesser extent, with the degree of caregiver burden.(AU)

Cuidar (com)sigo: Características e dificuldades dos cuidadores informais / Caring (with)me: Characteristics and difficulties of informal carers

O presente Relatório de Estágio, reporta-se ao Estágio de Enfermagem Comunitária e de Saúde Pública, realizado no âmbito do I Curso de Mestrado em Enfermagem Comunitária ? área de enfermagem de Saúde Comunitária e de Saúde Pública da Escola Superior de Enfermagem de Coimbra (ESEnfC). Nele consta a descrição e reflexão das atividades desenvolvidas ao longo do estágio, bem como a forma como estas contribuíram para o desenvolvimento de competências específicas do Enfermeiro Especialista em Enfermagem Comunitária e de Saúde Pública. O documento reflete ainda as componentes de investigação e intervenção previstas para esta unidade curricular, cuja área de trabalho foram os Cuidadores Informais (CI). Há várias décadas que se verifica uma tendência de envelhecimento demográfico na Europa, e Portugal acompanha essa tendência. O envelhecimento e o aumento da dependência da população implicam a necessidade crescente da prestação de cuidados no domicílio por familiares (Melo, Rua & Santos, 2014). Esse envelhecimento é ainda mais relevante no concelho de Cantanhede, com um índice de envelhecimento que é superior à média nacional em 85 pontos percentuais. Torna-se assim evidente, a necessidade de estudar os CI, conhecer as suas necessidades efetivas, melhorando a resposta nos cuidados e intervenções e promovendo a sua eficácia e eficiência. Assim, o estudo de investigação tem como objetivos: Caracterizar os CI e utentes a quem prestam cuidados; identificar as principais dificuldades dos CI, aplicando o Carers? Assessment of Difficulties Index (CADI); identificar as estratégias de coping dos CI, aplicando o Carers? Assessment of Managing Index (CAMI); avaliar a sobrecarga dos cuidadores através da Escala da Sobrecarga do Cuidador (ESC); identificar fatores associados à sobrecarga dos CI; estudar a relação entre algumas das variáveis; propor intervenções adequadas às necessidades dos CI. Foi ainda desenhado um projeto de intervenção ? ?Linha de apoio ao Cuidador Informal?, que adequa as intervenções de enfermagem às necessidades da população-alvo, permitindo assim uma resposta mais eficaz e eficiente.

Trasplante cardíaco por hemocromatosis. Caso pediátrico / Cardiac transplantation due to hemochromatosis. A pediatric case report

La hemocromatosis es una enfermedad caracterizada por el excesivo depósito de hierro en múltiples órganos, entre ellos hígado, páncreas, piel y corazón. La infiltración de este último es un importante factor en morbilidad y mortalidad. Presentamos un caso de un paciente pediátrico con insuficiencia cardíaca terminal que ameritó trasplante cardíaco, que resultó sin complicaciones. Posterior a la cirugía, mostró mejoría bioquímica y clínica, lo que influyó positivamente en su calidad de vida y prolongó su supervivencia.

Hemochromatosis is a disease characterized by excess iron stores in multiple organs, including the liver, pancreas, skin, and heart. The infiltration of the heart is an important factor in morbidity and mortality. Here we describe the case of a pediatric patient with end-stage heart failure who required a heart transplantation, with no complications. After the surgery, she showed biochemical and clinical improvement, with a positive impact on her quality of life and a prolonged survival.

[Cervical myelopathy due to copper deficiency secondary to dental zinc overload: A case report]. / Mielopatía cervical por déficit de cobre secundario a sobrecarga de zinc dental. A propósito de un caso.

We present the case of a 68-year-old man with progressive brachial and crural hypoaesthesia with gait ataxia suggesting subacute myelopathy of the posterior cords, demonstrated by MRI. After blood tests, a diagnosis of copper deficiency was made following zinc intoxication, secondary to the use of denture glue containing zinc. Treatment was started with copper and the dental glue was removed. Rehabilitation treatment was started with physiotherapy, hydrotherapy and occupational therapy. Functional improvement was achieved, going from an ASIAD level C4 to an ASIAD level C7 spinal cord injury. Copper levels should be studied in all non-compressive myelopathies of subacute onset if there is clear involvement of the posterior cords. Copper deficiency in analysis would establish the diagnosis. Rehabilitative treatment, supplementary copper supplementation and zinc withdrawal are essential to prevent irreversible neurological damage.

Evaluation of the burden of migraine on the partner's lifestyle.

BACKGROUND: Despite the number of research studies regarding the individual burden of migraine, few studies have examined its impact on the patients' partners. We aim to assess migraine effects on the patients' partners on sentimental relationship, children relationship, friendship, and work, as well as the caregiver burden, anxiety and/or depression. METHODS: A cross-sectional observational study was conducted through an online survey of partners of patients with migraine followed-up in 5 Headache Units. Questions about the 4 areas of interest and 2 scales (Hospital Anxiety and Depression Scale and Zarit scale) were included. Scores were compared against the population prevalence. RESULTS: One hundred and fifty-five answers were analysed. Among the patient's partners 135/155 (87.1%) were men, with a mean age of 45.6 ± 10.1 years. Migraine's main effects on partners were observed in the sentimental relationship and items concerning children and friendships, with a minor impact at work. Partners showed a moderate burden (12/155 = 7.7% [4.1%-13.1%]), and a higher moderate-severe anxiety rate (23/155 = 14.8% [9.6%-21.4%]), and similar depression rate (5/155 = 3.2% [1.1%-7.3%]) compared to the National Health Survey. CONCLUSIONS: The burden of migraine impacts the partners' personal relationship, childcare, friendship and work. Moreover, certain migraine partners showed a moderate burden according to Zarit scale and higher anxiety levels than the Spanish population.

Sobrecarga del cuidador familiar en Colombia: revisión sistemática exploratoria / Family caregiver's overburden in Colombia: An exploratory systematic review / Sobrecarga do cuidador familiar na Colômbia: revisão sistemática exploratória

Objetivo:describir las tendencias metodológicas, las poblaciones estudiadas y los desafíos futuros reportados en la literatura sobre lasobrecarga delcuidador familiar colombiano.Métodos:revisión sistemática exploratoria en donde se consultaron las bases de datos PubMed, ScienceDirect, Lilacs, Cuiden, SciELO, EBSCO y BVS, específicamente artículos originalespublicados del 2016 al 2021. Resultados:en 20 artículos revisados, se encontró una relación directa entre condiciones socioeconómicas y la sobrecarga del cuidador. El contexto cultural y las condiciones socioeconómicas son factores que influyen en la percepción de la sobrecarga del cuidador. Conclusiones:son necesarias las intervenciones de enfermeríadirigidasa los cuidadores familiares para mejorar su percepción de la sobrecarga y consecuentemente la calidad de vida

Objective: To describe methodological trends, populations studied, and future challenges reported in the literature on Colombian family caregivers' overburden. Methods: An exploratory systematic review using PubMed, ScienceDirect, LILACS, Cuiden, SciELO, EBSCO, and VHL databases was conducted, specifically original articles published between 2016 and 2021 were reviewed. Results:In 20 articles reviewed, a direct relationship was found between socioeconomic conditions and caregiver's overburden. Cultural context and socioeconomic conditions are factors that influence the perception of caregiver's overburden. Conclusions:Nursing interventions aimed at family caregivers are needed to improve their perception of overburden and, consequently, their quality of life

Objetivo:Descrever as tendências metodológicas, as populações estudadas e os desafios futuros relatados na literatura desobrecarga do cuidador familiar colombiano. Métodos:Revisão sistemática exploratória na qual foram consultadas as bases de dados PubMed, ScienceDirect, Lilacs, Cuiden, SciELO, EBSCO e BVS, com artigos originais, publicados de 2016 a 2021. Resultados:Em 20 artigos revisados, foi encontrada uma relação direta entre condições socioeconômicas e a sobrecarga do cuidador. O contexto cultural e as condições socioeconômicas são fatores que influenciam na percepção da sobrecarga do cuidador. Conclusões:As intervenções de enfermagem voltadas a cuidadores familiares são necessárias para melhorar sua percepção de sobrecarga e, consequentemente, sua qualidade de vida.

Impacto del periodo de confinamiento por la pandemia COVID-19 en España sobre la salud y la atención recibida por los niños, niñas y jóvenes con discapacidad originada en la infancia / The impact of COVID-19 lockdown on the health and care of children and adolescents with a childhood-onset disability

Introducción Durante el periodo inicial del confinamiento por la COVID-19 se tomaron una serie de medidas de restricción que modificaron el día a día de la población. En este estudio se buscó conocer el impacto de este periodo en la salud física y mental de niños y jóvenes con discapacidad originada en la infancia, y de sus familias, y describir los cambios que se produjeron en el acceso a la educación y a los servicios de salud. Material y métodos Se realizó un estudio analítico observacional y transversal. Los datos se obtuvieron mediante una encuesta electrónica a través de una plataforma online realizada por la Academia Europea de Discapacidad Infantil. La encuesta incluyó preguntas sobre cuatro bloques temáticos: características sociodemográficas y de salud, impacto del confinamiento en la salud y bienestar, acceso a la educación y a los servicios de salud. Resultados Se obtuvieron 145 respuestas. El 45,5% de los niños y jóvenes eran totalmente dependientes. Se percibió un impacto sobre su salud física (54,5%), mental (47,6%) y sobre ambas (32%), mayores niveles de estrés (68,3%) y problemas de sueño (41,4%), así como una sobrecarga muy elevada en el 84,8% de los progenitores, sobre todo en familias de niños con mayor nivel de dependencia (p<0,001). El 55% de los niños y jóvenes no recibieron ningún tratamiento durante este periodo, ni siquiera remoto. Conclusiones El confinamiento afectó en gran medida la salud física y mental, así como a los servicios recibidos por los niños y jóvenes con discapacidad y sus familias (AU)

Introduction During the initial period of COVID-19 lockdown, restriction measures modified the day-to-day life of the population. This study sought to know the impact of this period on the physical and mental health of children and young people with disabilities originating in childhood, and their families, and to describe the changes that occurred in access to education and health services. Material and methods An observational and cross-sectional analytical study was carried out. The data were obtained by means of an electronic survey through an online platform carried out by the European Academy of Childhood Disability. The survey included questions on four thematic blocks: sociodemographic and health characteristics, impact of lock down on health and well-being, and access to education and health services. Results One hundred and forty-five responses were obtained. 45.5% of the children and young people were totally dependent. There was an impact on their physical (54.5%), mental health (47.6%) and both (32%), higher levels of stress (68.3%), and sleep problems (41.4%), as well as a high burden in 84.8% of parents, especially in families of children with a higher level of dependency (P=.00). 55% of children and young people did not receive any treatment during this period, not even remotely. Conclusions COVID lock down period greatly affected physical and mental health, as well as the services for children and young people with disabilities and their families (AU)

The PERInatal MYocardial Remodeling (PERIMYR) cohort study protocol: A prospective study of cardiac remodeling and "recovery" in pregnancy as a model to understand the impact of comorbidities in cardiac remodeling and reverse remodeling.

INTRODUCTION: Heart failure (HF) is among the leading causes of morbidity and mortality worldwide. Several conditions trigger left ventricular chronic pressure or volume overload, hypertrophy, systolic and diastolic dysfunction, leading to cardiac remodeling and a rapid progression toward HF. Therapeutic interventions elicit reverse remodeling (RR), a highly variable myocardial response that ranges from none to total ventricular structural/functional recovery. However, HF patients present several comorbidities and medications that mask a comprehensive molecular knowledge of RR and hinder the identification of potential biomarkers of its progression or prognosis. Therefore, instead of using this heterogeneous population or even animal models to understand myocardial remodeling, we propose studying pregnancy-induced cardiovascular remodeling and postpartum-induced RR. OBJECTIVES: To assess cardiovascular functional and structural adaptations during pregnancy and in postpartum, characterizing the associated molecular changes; as well as to explore the impact of hypertension, obesity and diabetes on these processes. METHODS: We will perform echocardiography and assess endothelial function and arterial stiffness (EndoPAT® and pulse wave velocity, respectively) and assess potential markers of remodeling and RR using plasma and urine samples from pregnant women. To translate to a HF context, we will determine the impact of risk factors (hypertension, obesity and diabetes) by studying subgroups of pregnant women with these comorbidities. RESULTS: Not applicable. CONCLUSION: We are convinced that understanding the impact of these comorbidities in such a homogeneous population, such as pregnant women, provides a valuable model to unveil the most relevant pathologic and often masked signaling pathways underlying cardiac remodeling and incomplete RR in a heterogeneous population, such as HF patients. Moreover, we expect to identify potential novel biomarkers of RR progression/prognosis more easily.

Ankle Active Range of Motion as an Essential Factor of Footwork Technique in the Prevention of Overuse Injuries in Flamenco Dancers / Rango de movimiento activo del tobillo como factor esencial de la técnica de zapateado en la prevención de lesiones por sobreuso en bailarinas de flamenco

Flamenco dance is a performing art which is based on footwork technique where the foot and ankle play an important role.The objective of this study was to investigate the effect of ankle active range of motion on external load and its efficacy as apredictor during a flamenco footwork technique, with consideration of accelerometer positions and dance proficiency. Twelveflamenco dancers composed of 6 professional and 6 amateurs participated voluntarily in this study for whom no significantdifferences were detected regarding age, mass or height. Participants completed a 15-second Zap-3 footwork test at a speedof 160 bpm (beats per minute), 180 bpm and as fast as they could. Triaxial accelerometers were positioned at the dominantankle, 5th lumbar vertebrae and 7th cervical vertebrae to calculate accumulated PlayerLoad and uniaxial PlayerLoad of the3 planes (anteroposterior, mediolateral and vertical) for each speed level. Percentage contributions were also calculated. Theeffect of dorsiflexion on the external load of the dominant ankle of both professional and amateur dancers existed only in theanteroposterior axis while dorsiflexion was related to the external load at the 7th cervical vertebrae and only amateurs wereaffected. Plantarflexion only affected the uniaxial contribution of the vertical-axis of professional dancers. These programswould be applied to develop a technique feedback system for the flamenco dancer to follow their own model with respectto the ideal. This would allow intervention in the prevention of overuse injuries in flamenco dance artists.(AU)

El baile flamenco es un arte en el que el zapateado tiene un papel muy relevante. El objetivo de este estudio fue investigar elefecto del rango de movimiento activo del tobillo sobre la carga externa y su eficacia como predictor durante la realizaciónde un zapateado flamenco, en función de las posiciones del acelerómetro y el dominio técnico de los participantes. Un totalde doce bailaoras de flamenco, 6 profesionales y 6 amateurs, participaron voluntariamente en este estudio y en los que nose encontraron diferencias significativas respecto a edad, peso o estatura. Los participantes realizaron un test de zapateadodenominado Zap-3 durante 15 segundos a una velocidad de 160 pulsos por minuto, 180 y tan rápido como pudieron. Secolocaron acelerómetros triaxiales en el tobillo del pie dominante, en la 5ª vértebra lumbar y en la 7ª vértebra cervical paracalcular la PlayerLoad acumulada y la PlayerLoad uniaxial de los 3 planos (anteroposterior, medio-lateral y vertical) en funciónde cada nivel de velocidad, así como sus contribuciones porcentuales. Solamente se ha encontrado relación entre la flexióndorsal del tobillo dominante y la carga externa en el eje anteroposterior, tanto en profesionales como amateurs, mientras quea nivel de la 7ª vértebra cervical sólo se ha encontrado relación entre la dorsiflexión y la carga externa en el grupo de amateurs.Respecto a la flexión plantar solo se ha encontrado relación a nivel uniaxial con el eje vertical de los bailarines profesionales.Estos programas podrían servir de ayuda a desarrollar un sistema de retroalimentación de la técnica para que el practicantede baile flamenco pueda seguir su propio modelo respecto al ideal. Esto permitiría intervenir en la prevención de las lesionespor sobreuso en los artistas de baile flamenco.(AU)

Prevalencia y caracterización de la sobrecarga del cuidador primario de pacientes al final de la vida / Prevalence and characterization of overload of the primary caregiver of patients at the end of life

Introducción: El objetivo del presente estudio fue determinar la prevalencia de la sobrecarga del cuidador primario de pacientes al final de la vida que acuden al servicio de urgencias de este hospital y determinar sus características sociodemográficas. Pacientes y métodos: Se realizó un estudio de tipo observacional, descriptivo y prospectivo; se incluyeron 264 cuidadores principales de pacientes que se encontraban en la fase final de la vida, quienes recibieron atención médica por complicaciones de su patología de base en el servicio de urgencias del Hospital General de México “Dr. Eduardo Liceaga”, en un periodo de 6 meses, del 1 de abril de 2021 al 31 de septiembre de 2021, con los siguientes criterios de inclusión: ser el cuidador principal, tener un lazo familiar con un enfermo, con participación voluntaria, tener más de 18 años de edad. Los participantes, previa firma del consentimiento informado, contestaron los cuestionarios de datos demográficos, escala de Zarit abreviada, escala de Katz. Dentro de la valoración multidimensional del paciente con enfermedad terminal, la valoración biológica es fundamentada por la situación funcional del enfermo; para valorar la dependencia para las actividades de la vida diaria se puede emplear el índice de Katz. Resultados: Se incluyeron 264 cuidadores primarios, 187 (70,8 %) fueron del género femenino y 77 (29,2 %) del género masculino; la edad mínima fue de 18 años y máxima de 80 años, con una mediana de 44 años. Del total de cuidadores analizados 219 (83 %) presentaban sobrecarga del cuidador en el momento de la entrevista. De los sujetos estudiados, 138 (52,3 %) eran cuidadores únicos, de los cuales más de la mitad (57 %) padecían sobrecarga del cuidador. (AU)

Introduction: The objective of this study was to determine the prevalence of overload among the primary caregivers of patients at the end of life who attended the emergency department of this hospital, and to determine their sociodemographic characteristics. Patients and methods: An observational, descriptive and prospective study was carried out, including 264 main caregivers of patients who were in the final phase of life, who received medical care for complications of their underlying condition in the emergency department of the General Hospital of Mexico “Dr. Eduardo Liceaga” over a period of 6 months, from April 1, 2021 to September 31, 2021, with the following inclusion criteria: being the main caregiver, having a family relationship with the patient, voluntary participation, being more than 18 years old. The participants, after signing an informed consent, completed the demographic data questionnaires, the abbreviated Zarit scale, and the Katz scale. Within the multidimensional assessment of the terminally ill patient, the biological assessment is based on the patient’s functional status; to assess dependence on activities of daily living, the Katz index can be used. Results: A total of 264 primary caregivers were included, 187 (70,8%) were female and 77 (29,2%) were male; the minimum age was 18 years and the maximum age was 80 years, with a median of 44 years. Of the total number of caregivers analyzed, 219 (83%) presented caregiver collapse syndrome at the time of the interview. Of the subjects studied, 138 (52,3%) were sole caregivers, of which more than half (57%) suffered from caregiver collapse syndrome. (AU)