Adaptación transcultural y validación del Picker Patient Experience Questionnaire-15 para su uso en población española / Cross-cultural adaptation and validation of the Picker Patient Experience Questionnaire-15 for use in the Spanish population

Objetivo: Realizar una adaptación transcultural y una validación del cuestionario Picker Patient Experience Questionnaire-15 (PPE-15) al español para explorar la percepción de los pacientes sobre el proceso de información y la participación en la toma de decisiones durante el ingreso hospitalario. Incorporar nuevas dimensiones que, al no estar recogidas por el PPE-15, se consideren relevantes para pacientes españoles en relación con la información y la toma de decisiones durante la hospitalización. Material y métodos: Estudio de adaptación transcultural y validación del cuestionario PPE-15 a través de la traducción de la versión original, la validación del contenido y la ampliación del cuestionario en una nueva versión llamada PPE-33. Se llevó a cabo una prueba piloto para comprobar la aceptabilidad y la viabilidad del cuestionario. Finalmente, se evaluó la validez de concepto, fiabilidad y consistencia interna a través de un estudio transversal. Los participantes fueron pacientes adultos posthospitalizados, a los que se les administraron las sucesivas versiones del cuestionario. Resultados Se obtuvo un alto grado de concordancia entre el PPE-15 original y el PPE-33 (índice de Kappa de 0,872). El PPE-33 mostró un alto grado de estabilidad a los 15 días (test de McNemar; p>0,05). Se consiguió un valor de 80 (muy fácil de leer) en la fórmula de perspicuidad de Szigriszt. El PPE-33 obtuvo una alta consistencia interna (alfa de Cronbach de 0,792). Conclusiones El cuestionario PPE-15 adaptado al español en el PPE-33 es un instrumento fiable y válido para explorar la percepción sobre la información y la participación en la toma de decisiones durante la hospitalización (AU)

Objective: To carry out a transcultural adaptation and validation of the Picker Patient Experience Questionnaire-15 (PPE-15). To incorporate new dimensions such as informed consent and decision making, that are not addressed in the PPE-15 but are considered relevant for Spanish patients on information and decision making in hospital. Material and method: Cross-culture adaptation and validation of the (PPE-15). Material and method: A translation of the original version of the questionnaire PPE-15 has been carried out. Content validity has been studied and a new Spanish version has been designed and validated, the PPE-33 questionnaire. The original version of the PPE-15 was translated into Spanish and the content and construct validity of the PPE-33 were studied. A pilot test assessed the acceptability and feasibility of the questionnaire and eventually, construct validity, reliability and internal consistency were evaluated. Results: A high concordance between the original version of the PPE-15 questionnaire and the PPE-33 (Kappa 0,872). The PPE-33 showed good stability within 15 days (McNemar Es Test P>0.05). The Szigriszt Readability Score was 80 (very easy to read). The PPE-33 obtained a high internal consistency (Cronbach Es alpha 0.792). Conclusions: The PPE-15 adapted to Spanish as the PPE-33, is a reliable and valid instrument to measure the perception and satisfaction of patients that have been hospitalised, regarding information, treatment received and participation in decision making (AU)

[Cross-cultural adaptation and validation of the Picker Patient Experience Questionnaire-15 for use in the Spanish population]. / Adaptación transcultural y validación del Picker Patient Experience Questionnaire-15 para su uso en población española.

OBJECTIVE: To carry out a transcultural adaptation and validation of the Picker Patient Experience Questionnaire-15 (PPE-15). To incorporate new dimensions such as informed consent and decision making, that are not addressed in the PPE-15 but are considered relevant for Spanish patients on information and decision making in hospital. MATERIAL AND METHOD: Cross-culture adaptation and validation of the (PPE-15). A translation of the original version of the questionnaire PPE-15 has been carried out. Content validity has been studied and a new Spanish version has been designed and validated, the PPE-33 questionnaire. The original version of the PPE-15 was translated into Spanish and the content and construct validity of the PPE-33 were studied. A pilot test assessed the acceptability and feasibility of the questionnaire and eventually, construct validity, reliability and internal consistency were evaluated. RESULTS: A high concordance between the original version of the PPE-15 questionnaire and the PPE-33 (Kappa 0.872). The PPE-33 showed good stability within 15 days (McNemar's Test P>0.05). The Szigriszt Readability Score was 80 (very easy to read). The PPE-33 obtained a high internal consistency (Cronbach's alpha 0.792). CONCLUSIONS: The PPE-15 adapted to Spanish as the PPE-33, is a reliable and valid instrument to measure the perception and satisfaction of patients that have been hospitalised, regarding information, treatment received and participation in decision making.

[The case of Inmaculada Echevarría: ethical and legal implications]. / El caso de Inmaculada Echevarría: implicaciones éticas.

Inmaculada Echevarría was a woman with Progressive Muscular Dystrophy who was totally dependent on mechanical ventilation. In October 2006, she publicly asked to be disconnected of the ventilator. The clinical and biographical data of the case are presented in the first part of the work. The paper goes on to explain the decisions of the two committees that evaluated her request, that is the Regional Ethics Committee and the Consultative Council of Andalusia. Finally, the outcome of the case is presented. The second part analyzes the background of the debate on end-of-life decision making in Spain in cases such as those of Ramon Sampedro, Jorge Leon or Madeleine Z. It then presents four different settings of end-of-life decision making that have been clarified over these last years: euthanasia and assisted suicide, limitation of life-prolonging treatment, treatment refusal and palliative sedation. The article concludes that the latter three can be considered as sufficiently clarified after the case of Inmaculada Echevarría. However, the first one, that is euthanasia and assisted suicide, must be confronted by the Spanish society in forthcoming years.

El caso de Inmaculada Echevarría: implicaciones éticas / The case of Inmaculada Echevarría: ethical and legal implications

Inmaculada Echevarría padecía una distrofía muscular progresiva dependiente de ventilación mecánica. En octubre de 2006 solicitó ser sedada y desconectada del ventilador. En la primera parte del trabajo se exponen los datos clínicos y biográficos del caso. Luego se presentan las decisiones de la Comisión Autonómica de Ética e Investigación de Andalucía y el Consejo Consultivo de Andalucía, que evaluaron el caso, y el desenlace final. La segunda parte señala los antecedentes del debate, con casos como los de Ramón Sampedro, Jorge León o Madeleine Z. Luego se presentan los cuatro escenarios diferentes sobre la toma de decisiones al final de la vida que el debate ha ido clarificando en estos años: eutanasia y suicidio asistido, limitación del esfuerzo terapéutico, rechazo de tratamiento y sedación paliativa. El artículo concluye que, tras el caso de Inmaculada Echevarría, pueden darse por aclarados los tres últimos. Es el primero lo que la sociedad española deberá afrontar en los próximos años

Inmaculada Echevarría was a woman withProgressive Muscular Dystrophy who was totallydependent on mechanical ventilation. In October2006, she publicly asked to be disconnected ofthe ventilator. The clinical and biographical dataof the case are presented in the first part of thework. The paper goes on to explain the decisionsof the two committees that evaluated her request,that is the Regional Ethics Committee and theConsultative Council of Andalusia. Finally, theoutcome of the case is presented. The secondpart analyzes the background of the debate onend-of-life decision making in Spain in cases suchas those of Ramon Sampedro, Jorge Leon orMadeleine Z. It then presents four different settingsof end-of-life decision making that havebeen clarified over these last years: euthanasiaand assisted suicide, limitation of life-prolongingtreatment, treatment refusal and palliative sedation.The article concludes that the latter threecan be considered as sufficiently clarified afterthe case of Inmaculada Echevarría. However, thefirst one, that is euthanasia and assisted suicide,must be confronted by the Spanish society inforthcoming years

[Validation of the INFLESZ scale to evaluate readability of texts aimed at the patient]. / Validación de la Escala INFLESZ para evaluar la legibilidad de los textos dirigidos a pacientes.

BACKGROUND: The readability of written texts aimed at patients is an indicator of quality. Szigriszt made an adaptation of the RES Flesch Score, calling it "Escala de Nivel de Perspicuidad" (Clarity Level Scale), to measure the difficulty in reading a text. But Szigriszt used a text sample that was neither representative nor random, which is why the conclusions are not sufficiently consistent. The aim of this article is to complete the process begun by Szigriszt, review the Szigriszt Scale, comparing it with Flesch's scale, and propose a scale according to Spanish reading habits. METHODS: Descriptive study. Two hundred and ten documents of 3 types were selected at random: Stationary magazines, school textbooks and scientific magazines. Three fragments of at least 500 words were chosen at random from each one, from the beginning, middle and end. The Flesch-Szigriszt Index (Indice de Legibilidad de Flesch-Szigriszt [IFSZ]), available on the INFLESZ program, was calculated. The scores were classified according to the Flesch and Szigriszt scales. RESULTS: The readability of the stationary magazines is 60, of scientific magazines 37.9, and school textbooks 67.39. CONCLUSIONS: Only the scientific magazines are situated between 0 and 50. There are no publications with scores lower than 15. Szigrsizt locates "Normal" from 50; Flesch from 60. An intermediate position is adopted and a new scale is proposed: the INFLESZ Scale, which establishes 5 sections: "Very difficult" (<80), "Somewhat difficult" (40-55), "Normal" (55-65), "Quite easy" (65-80) and "Very easy" (>80). Neither the Clarity Level Scale of Szigriszt nor the RES Flesch Score are adapted to Spanish reading habits. In the case of texts on health, there is a greater probability of their being read and understood if they exceed 55.

Efectividad de una intervención comunitaria integral para aumentar los conocimientos, actitudes y cumplimentación de voluntades vitales anticipadas / No disponible

Objetivos: estudiar la efectividad de una intervención comunitaria integral respecto a la mejora de los conocimientos y actitudes de ciudadanos y profesionales acerca de las voluntades vitales anticipadas (VVA), y de la cumplimentación de VVA por los ciudadanos. Comparar los resultados antes y después de la intervención, con los del grupo control. Diseño: estudio de intervención con valoración pre- y post-. Ensayo comunitario controlado no aleatorizado. Emplazamiento: centros de Atención Primaria y Especializada del Distrito Sanitario La Vega (Málaga) y red de tejido social de sus localidades para el grupo Intervención y el Distrito Levante-Alto Almanzora (Almería) para el grupo control. Participantes: ciudadanos mayores de 18 años residentes en los Distritos Sanitarios la Vega (grupo intervención) y Levante-Alto Almanzora (grupo control). Profesionales sanitarios de ambos distritos. Materiales: instrumentos de medición: Cuestionarios sobre conocimientos y actitudes para ciudadanos y profesionales. Materiales divulgativos: cartel, tríptico y tarjeta. Materiales formativos: unidades didácticas de Educación para la Salud para usuarios y profesionales. Material de apoyo: guía de cumplimentación de VVA. Intervención: intervenciones educativas, de sensibilización y de apoyo cognitivo y emocional sobre las VVA y su cumplimentación. Discusión: el estudio permitirá comprobar la efectividad real de medidas incentivadoras de la cumplimentación de VVA por los ciudadanos, lo que ayudará a las organizaciones sanitarias autonómicas a establecer planes efectivos de desarrollo sobre las voluntades vitales anticipadas (AU)

Objectives: to asses the effectiveness of a Community Intervention Program concerned with attitude and knowledge improvement in citizens and healthcare professionals regarding advance directives, and the completion of advance directives by citizens. Design: a community intervention study with pre and post assessment. Non-randomized controlled community trial. Setting: Primary Healthcare Centers and hospitals from La Vega Healthcare District (Málaga) and the social network made up by its municipalities for the intervention group, and the Levante-Alto Almanzora (Almería) district as control group. Participants: citizens over 18 years of age residing in La Vega Healthcare District (intervention group) and Levante-Alto Almanzora District (control group). Healthcare professionals from both districts. Materials: measurement instruments: knowledge and attitudes questionnaire for citizens and healthcare professionals. Informative materials: poster, leaflet, and card. Formative materials: educational units on health education for citizens and healthcare professionals. Support materials: advance directives completion guide. Interventions: educational, cognitive and emotional support interventions and campaigns to raise awareness of advance directives and their completion. Discussion: the study will allow us to measure the actual effectiveness of incentives within the process of completion of advance directives by citizens, there by assisting regional healthcare organizations to establish effective development plans for advance directives (AU)

[Can patients read what we want them to read? Analysis of the readability of printed materials for health education]. / ¿Pueden leer los pacientes lo que pretendemos que lean? Un análisis de la legibilidad de materiales escritos de educación para la salud.

OBJECTIVE: To analyze readability and legibility of a systematic sample of health education materials made available at a health center, and to propose recommendations for improvement. DESIGN: Observational, descriptive study. SETTING: An urban health center in Madrid, Spain. MATERIAL: A sample of text from 326 health education documents. MAIN MEASURES: The 326 texts were classified according to target reader, organism responsible for publication, topic, and date of publication. A sample of 500 words from each document was analyzed with Microsoft Word 2000 to determine the Flesch readability score and sentence complexity index, and to calculate the INLEG index. Print size and accompanying graphics were also analyzed. RESULTS: Readability of the materials was generally acceptable, with a mean Flesch score of 13.56. However, the type tended to be too small (mean 11.37 points). In 32% of the documents there were no illustrations, and no date of publication was given in 46%. CONCLUSIONS. The readability and legibility in the group of documents we analyzed could both be improved by following the recommendations offered here. Further research is needed on the techniques used to analyze readability and legibility, especially with regard to the latter.

¿Pueden leer los pacientes lo que pretendemos que lean? Un análisis de la legibilidad de materiales escritos de educación para la salud / Can patients read what we want them to read? Analysis of the readability of printed materials for health education

Objetivo. Analizar la legibilidad lingüística formal y la legibilidad tipográfica de una muestra sistemática de folletos de educación para la salud disponibles en un centro de salud y proponer recomendaciones para mejorarlas. Diseño. Estudio observacional, descriptivo. Emplazamiento. Un centro de salud urbano de Madrid. Material. Una muestra de texto de 326 folletos de EPS. Mediciones principales. Los 326 textos fueron clasificados según el destinatario, la entidad patrocinadora y temática, y la existencia de fecha de edición. Se analizó una muestra de 500 palabras de cada folleto con el programa Microsoft Word 2000, para determinar su puntuación de Flesch y el índice de complejidad oracional y estimar el índice LEGIN. Se analizó el tamaño de la letra y la presencia de imágenes informativas. Resultados. Los folletos presentan una legibilidad lingüística de conjunto aceptable, con una media de puntuación de Flesch de 13,56, pero tienden a escribirse con letra pequeña, con un tamaño medio de 11,37.En un 32 por ciento no había imágenes informativas y un 46 por ciento no tenía fecha de edición. Conclusiones. El grupo de folletos analizados muestra una legibilidad lingüística y tipográfica que es muy mejorable siguiendo las recomendaciones que se proponen. Es preciso seguir investigando en las técnicas de análisis de la legibilidad, especialmente de la legibilidad tipográfica. (AU)

[The legibility of written informed consent forms]. / Legibilidad de los formularios escritos de consentimiento informado.

BACKGROUND: The generation of the use of informed consent forms makes necessary to grant their legibility for patients. Up to now, we didn't have in Spain a suitable yardstick for evaluating the reading levels. METHODS: A sample of 10 texts of diverse procedence, 8 journals and 16 informed consent forms were collected. They were analyzed using the Grammatik 6.0 utility of the word processor Word Perfect 6.1, and four parameters were obtained: number of words, number of sentences, Flesch-Kincaid Grade Level and Sentence Complexity. In addition an Integrated Readability Level (LEGIN) was calculated. RESULTS: Flesch Level and Sentence Complexity give a suitable and complementary analysis of readability, which is enhanced by the LEGIN. The acceptably reading level is obtained when the Flesch-Kincaid Level is above 10, the Sentence Complexity is under 40 and, overcoat, the LEGIN is above 70. Just 5 of the 16 consent forms had the adequate LEGIN level. Another 5 had the Flesch correct levels and 7 the adequate Sentence Complexity. CONCLUSIONS: The Grammatik utility of the word processor Word Perfect 6.1 is a suitable yardstick to analyze the readability, but is necessary to complete the analysis with the LEGIN, to render more sensibility and especificity. It's mandatory to enhance the readability of written forms to grant the ethical quality of the informed consent process.