[Fatigue, quality of life, and use of healthcare resources in children with complex chronic diseases].

BACKGROUND: The objective was to assess fatigue in children with complex chronic diseases (CCCDs) and analyze its relationship with clinical and sociodemographic characteristics, use of healthcare services, and quality of life (QoL). METHODS: Cross-sectional study carried out in CCCDs attended in a tertiary hospital during 2016. Fatigue (PedsFacit-F questionnaire) and quality of life (PedsQL) were determined, and the following variables were registered: use of health resources, disease group, time with disease, and educational level and type of employment of the parents. A multiple regression model was developed to predict the use of healthcare resources. RESULTS: Seventy children were included in this study; mean age 10.5 years (range: 8-17), 41.4% girls, and cancer was the most frequent group disease (28.6%). Annual use of healthcare resources (38.86; SD: 30.73) increased with fatigue (r=-0.292; p=0.015). Higher levels of fatigue were determined for children with cancer (24.9; SD: 10.7) in comparison to other pathologies, while lower levels were found for heart diseases (44.5; SD: 7.9). The QoL perceived by CCCDs (20.6; SD: 16.5) directly correlated (p<0.001) with that of their parents (22.8; SD: 16.8); a correlation with fatigue was seen in both cases (r=0.528 and r= 0.441; p<0.0001). The adjusted effect of higher levels of fatigue (lower scores), lower length of disease duration, and higher level of education of the mother, predicted greater use of healthcare resources. CONCLUSION: CCCDs with higher fatigue levels use healthcare resources more often and perceive a worse QoL. This should be considered when providing care to this population.

Fatiga, calidad de vida y utilización de recursos sanitarios en niñoscon enfermedades crónicas complejas / Fatigue, quality of life and health resource utilisation in children with complex chronic diseases

Fundamento: Nuestro objetivo fue determinar la fatiga en niños con enfermedades crónicas complejas (NECC) y analizar su asociación con características clínicas, sociodemográficas, utilización de servicios de salud y calidad de vida. Material y método: Estudio transversal realizado en NECC atendidos en un hospital terciario durante 2016. Se determinaron la fatiga (cuestionario PedsFacit-F) y la calidad de vida (cuestionario PedsQL), y se recogieron las variables uso de recursos sanitarios, grupo de enfermedad, tiempo con la enfermedad, y nivel de estudios y ocupación profesional de los progenitores. Se elaboró un modelo de regresión múltiple para predecir el uso de recursos. Resultados: Se incluyeron 70 niños, edad media 10,5 años (rango: 8-17), 41,4% niñas; la enfermedad oncológica fue la más frecuente (28,6%). El uso anual de recursos sanitarios (38,86; DE: 30,73) aumentó con la fatiga (r=-0,292; p=0,015). Las enfermedades oncológicas causaron más fatiga (24,9; DE: 10,7) que otras patologías y las cardiológicas menos (44,5; DE: 7,9). La calidad de vida percibida por NECC (20,6; DE: 16,5) correlacionó directa y significativamente (p<0,001) con la de sus progenitores (22,8; DE: 16,8); ambas se correlacionaron con la fatiga (r=0,528 y r=0,441; p<0,0001). El modelo de regresión lineal mostró que el efecto ajustado de mayor fatiga (menor puntuación), menor tiempo con la enfermedad y mayor nivel de estudios de la madre predijeron mayor uso de recursos de salud. Conclusión: Los NECC con mayor fatiga hacen mayor uso de los recursos sanitarios, y perciben una peor calidad de vida, aspectos que deberían tenerse en cuenta a la hora de prestar atención a esta población.(AU)

Background: The objective was to assess fatigue in children with complex chronic diseases (CCCDs) and analyze its relationship with clinical and sociodemographic characteristics, use of health care services, and quality of life (QoL). Methods.: Cross-sectional study carried out in CCCDs attended in atertiary hospital during 2016. Fatigue (PedsFacit-F questionnaire) and quality of life (PedsQL) were determined, and the following variables were registered: use of health resources, disease group, time with disease, and educational level and type of employment of the parents. A multiple regression model was developed to predict the use of healthcare resources. Results: Seventy children were included in this study; mean age 10.5 years (range: 8-17), 41.4% girls, and cancer was the most frequent group disease (28.6%). Annual use of healthcare resources (38.86; SD: 30.73) increased with fatigue (r= -0.292; p= 0.015). High-er levels of fatigue were determined for children with cancer (24.9; SD: 10.7) in comparison to other pathologies, while lower levels were found for heart diseases (44.5; SD: 7.9). The QoL perceived by CCCDs (20.6; SD: 16.5) directly correlated (p <0.001) with that of their parents (22.8; SD: 16.8); a correlation with fatigue was seen in both cases (r= 0.528 and r= 0.441; p <0.0001). The adjusted effect of higher levels of fatigue (lower scores), lower length of diseaseduration, and higher level of education of the mother, predicted greater use of healthcare resources. Conclusion: CCCDs with higher fatigue levels use healthcare resources more often and perceive a worse QoL. This should be con-sidered when providing care to this population.(AU)

Percepciones de los profesionales sobre la atención prestada, obstáculos y dilemas éticos relacionados con el final de la vida en hospitales, centros de Atención Primaria y residencias de ancianos / Perceptions of health care professionals about end-of-life care, obstacles and ethical dilemmas in hospitals, primary care and nursing homes

Fundamento: Este estudio compara la percepción de la práctica profesional, los obstáculos percibidos y los dilemas éticos de profesionales de medicina y enfermería en la atención al final de la vida en atención primaria (AP), atención hospitalaria (AH) y residencias de ancianos (RA). Material y Métodos: Estudio descriptivo, transversal y multicéntrico. Se realizó un muestreo intencional de profesionales de medicina y enfermería con más de cuatro meses de antigüedad de cuatro hospitales, cinco centros de AP y veintinueve RA de Granada. Se recogieron mediante un cuestionario ad hoc: la percepción de la práctica profesional en ocho dimensiones (estructura y procesos, aspectos físicos, psicológicos, sociales, espirituales, culturales, éticos y cuidados del moribundo), la frecuencia percibida de dilemas éticos, y los obstáculos para el cuidado. Se compararon las puntuaciones de los distintos contextos con la prueba ANOVA y análisis post hoc. Resultados: Participaron 378 profesionales, 215 (56,9%) de AH, 97 (25,7%) de AP y 66 (17,5%) de RA. En comparación a los profesionales de AP y AH, los de RA fueron significativamente (p <0,01) más jóvenes y con mayor experiencia profesional, y puntuaron significativamente mejor (p <0,01) tanto su propia práctica profesional como la de la institución en relación a las dimensiones de estructura y procesos de atención, aspectos físicos, psicológicos, sociales, espirituales, culturales y atención al moribundo. Los aspectos psicológicos y éticos fueron los peor valorados en todos los contextos, no encontrándose diferencias respecto a estos últimos. En comparación a los otros ámbitos estudiados, los profesionales de AP identificaron menos dilemas y los de RA percibieron mayores obstáculos. Conclusiones: Profesionales de AP y AH presentan resultados similares en la percepción de la atención al final de la vida, e inferiores a los de RA, pese a que en las RA se presentan más dilemas y obstáculos

Background: This study compares the perceptions of physicians and nurses regarding professional practice, perceived obstacles and ethical dilemmas in end-of-life care in primary care (PC), hospitals and nursing homes (NH). Methods: Descriptive, cross-sectional and multicentre study. Intentional sampling of physicians and nurses with more than four months professional practice from four hospitals, five PC centres and twenty-nine NH in Granada was carried out. An ad hoc questionnaire was developed to assess perception of professional practice in eight dimensions (structure and processes of care, physical, psychological, social, spiritual, cultural, ethical aspects and care for the dying), frequency of ethical dilemmas, and obstacles to optimum care. Scores of different settings were compared using the ANOVA test and post hoc analysis. Results: A total of 378 professionals participated, 215 (56.9%) from hospitals, 97 (25.7%) from PC and 66 (17.5%) from NH. NH professionals were older and had more professional experience than those from PC and hospitals, and they also rated both the institution and their own professional practice significantly better (p<0.01) than other professionals with respect to the dimensions of structure and processes of care, physical, psychological, social, spiritual, cultural aspects and care for the dying. Psychological and ethical aspects were the worst valued in all settings, with no differences regarding ethical aspects. Fewer ethical dilemmas were identified by PC professionals, while NH professionals perceived greater obstacles to end-of-life care in relation to other settings. Conclusion: Primary care and hospitalization presented similar results on the perception of end-of-life care, and lower results than those of nursing homes, although in these centres more ethical dilemmas and more obstacles were identified

[Perceptions of health care professionals about end-of-life care, obstacles and ethical dilemmas in hospitals, primary care and nursing homes.] / Percepciones de los profesionales sobre la atención prestada, obstáculos y dilemas éticos relacionados con el final de la vida en hospitales, centros de Atención Primaria y residencias de ancianos.

BACKGROUND: This study compares the perceptions of physicians and nurses regarding professional practice, perceived obstacles and ethical dilemmas in end-of-life care in primary care (PC), hospitals and nursing homes (NH). METHODS: Descriptive, cross-sectional and multicentre study. Intentional sampling of physicians and nurses with more than four months professional practice from four hospitals, five PC centres and twenty-nine NH in Granada was carried out. An ad hoc questionnaire was developed to assess perception of professional practice in eight dimensions (structure and processes of care, physical, psychological, social, spiritual, cultural, ethical aspects and care for the dying), frequency of ethical dilemmas, and obstacles to optimum care. Scores of different settings were compared using the ANOVA test and post hoc analysis. RESULTS: A total of 378 professionals participated, 215 (56.9%) from hospitals, 97 (25.7%) from PC and 66 (17.5%) from NH. NH professionals were older and had more professional experience than those from PC and hospitals, and they also rated both the institution and their own professional practice significantly better (p<0.01) than other professionals with respect to the dimensions of structure and processes of care, physical, psychological, social, spiritual, cultural aspects and care for the dying. Psychological and ethical aspects were the worst valued in all settings, with no differences regarding ethical aspects. Fewer ethical dilemmas were identified by PC professionals, while NH professionals perceived greater obstacles to end-of-life care in relation to other settings. CONCLUSION: Primary care and hospitalization presented similar results on the perception of end-of-life care, and lower results than those of nursing homes, although in these centres more ethical dilemmas and more obstacles were identified.

Cultural adaptation and validation of the Lasater Clinical Judgment Rubric in nursing students in Spain.

BACKGROUND: The clinical judgment and decision-making abilities of nurses can influence many health outcomes, hence the importance of addressing these qualities in university studies. In this respect, clinical simulation is a commonly employed teaching method. The evaluation of simulation activities requires standardised instruments, such as the Lasater Clinical Judgment Rubric, which is widely used for this purpose, although a culturally adapted and validated version in Spain is not available. AIMS: To obtain a Spanish culturally adapted and validated version of the rubric for undergraduate students of nursing. DESIGN, PARTICIPANTS AND SETTING: Cultural adaptation and psychometric validation study carried out with undergraduate nursing students in the simulation laboratories at the University of Málaga (Spain). METHODS: A process of translation/back-translation and cultural adaptation was carried out in accordance with international standards. The rubric was empirically evaluated in standardised scenarios with high and medium-fidelity simulators. Each student took part in two different simulation sessions, led by two instructors. In each simulation, the data were collected by two independent observers. RESULTS: 152 observations were obtained from 76 students. The interobserver reliability was high, with an intraclass correlation coefficient of 0.93 (95% CI 0.92-0.95) (p = 0.0001) and Cronbach's alpha of 0.93. According to the confirmatory factor analysis, the fit of the model was satisfactory in all indices, with a χ2/df value of 1.08, GFI 0.96, TLI 0.99, NFI 0.97 and RMSEA 0.24 (90% CI 0.000-0.066). CONCLUSIONS: The rubric obtained is culturally adapted to the Spanish educational context, and is valid and reliable for nursing students. Further prospective studies should be undertaken to evaluate the responsiveness, potential for transfer to clinical practice and cost-benefit ratios of different simulation designs.