The CrowdHEALTH project and the Hollistic Health Records: Collective Wisdom Driving Public Health Policies.

INTRODUCTION: With the expansion of available Information and Communication Technology (ICT) services, a plethora of data sources provide structured and unstructured data used to detect certain health conditions or indicators of disease. Data is spread across various settings, stored and managed in different systems. Due to the lack of technology interoperability and the large amounts of health-related data, data exploitation has not reached its full potential yet. AIM: The aim of the CrowdHEALTH approach, is to introduce a new paradigm of Holistic Health Records (HHRs) that include all health determinants defining health status by using big data management mechanisms. METHODS: HHRs are transformed into HHRs clusters capturing the clinical, social and human context with the aim to benefit from the collective knowledge. The presented approach integrates big data technologies, providing Data as a Service (DaaS) to healthcare professionals and policy makers towards a "health in all policies" approach. A toolkit, on top of the DaaS, providing mechanisms for causal and risk analysis, and for the compilation of predictions is developed. RESULTS: CrowdHEALTH platform is based on three main pillars: Data & structures, Health analytics, and Policies. CONCLUSIONS: A holistic approach for capturing all health determinants in the proposed HHRs, while creating clusters of them to exploit collective knowledge with the aim of the provision of insight for different population segments according to different factors (e.g. location, occupation, medication status, emerging risks, etc) was presented. The aforementioned approach is under evaluation through different scenarios with heterogeneous data from multiple sources.

CrowdHEALTH: Holistic Health Records and Big Data Analytics for Health Policy Making and Personalized Health.

Today's rich digital information environment is characterized by the multitude of data sources providing information that has not yet reached its full potential in eHealth. The aim of the presented approach, namely CrowdHEALTH, is to introduce a new paradigm of Holistic Health Records (HHRs) that include all health determinants. HHRs are transformed into HHRs clusters capturing the clinical, social and human context of population segments and as a result collective knowledge for different factors. The proposed approach also seamlessly integrates big data technologies across the complete data path, providing of Data as a Service (DaaS) to the health ecosystem stakeholders, as well as to policy makers towards a "health in all policies" approach. Cross-domain co-creation of policies is feasible through a rich toolkit, being provided on top of the DaaS, incorporating mechanisms for causal and risk analysis, and for the compilation of predictions.

[Translation and adaptation to Spanish language of the quality of life questionnaire for sleep apnea-hipopnea syndrome Quebec Sleep Questionnaire]. / Traducción y adaptación al castellano del cuestionario de calidad de vida relacionado con el síndrome de apnea-hipopnea del sueño Quebec Sleep Questionnaire.

BACKGROUND AND OBJECTIVE: The objective of this study was to translate and adapt to Spanish the Québec Sleep Questionnaire (QSQ). METHODS: For QSQ tran-cultural adaptation, the back-translation technique was used. A psychologist and a pneumonologist made a first translation of the questionnaire. Naturalness-correctness of items and conceptual equivalence were evaluated by external researchers and a group of patients. A back-translation was finally remitted to author. RESULTS: Most of the items had minimal difficulty in translation. The difficulty was moderate in only 4 of them (items 2, 7, 8, 30). Naturalness-correctness was maximal in most items and excellent in 4 (8 to 9 points). The conceptual equivalence was complete in all the items, except item 2 that showed a partial equivalence. CONCLUSIONS: The first translation and adaptation to Spanish language of the quality of life questionnaire QSQ has been done. The translation has minimal difficulty and the conceptual equivalence is almost complete.

Internal consistency and validity of the Spanish version of the "Quebec Sleep Questionnaire" quality-of-life questionnaire for obstructive sleep apnea.

INTRODUCTION: There is no specific health-related quality of life (HRQL) questionnaire that has been validated in Spanish for its use in patients with sleep apnea-hypopnea syndrome (SAHS). The objective of the present study was to validate the Spanish version of the Quebec Sleep Questionnaire (QSQ). PATIENTS AND METHODS: A multi-center study including a group of patients with SAHS (AHI≥5) referred to the Sleep Unit. All patients completed the following questionnaires: SF-36, FOSQ, QSQ and Epworth scale. Internal consistency, construct validity, concurrent validity, predictive validity, repeatability and responsiveness to change of the QSQ (32 items in five domains: daytime sleepiness, diurnal symptoms, nocturnal symptoms, emotions, and social interactions) were assessed. RESULTS: A hundred twenty one patients were included in the study (mean age: 57 ± 13; mean Epworth: 9 ± 4; mean Body Mass Index (BMI): 28 ± 3 kg·m(-2) and mean AHI: 36 ± 20 hour(-1)). The factorial analysis showed a construct of five factors with similar distribution to the original questionnaire domains. Internal consistency (Cranach's alpha between 0.78 and 0.93 for the different domains), concurrent validity (compared to SF-36, Epworth scale and FOSQ), predictive validity of SAHS severity and test-retest reliability were appropriate. The test showed good responsiveness to change in diurnal (P=.003) and nocturnal symptoms domains (P=.02). CONCLUSIONS: The Spanish version of the QSQ is a valid HRQL measure with appropriate psychometric properties for use in patients with SAHS and is responsive to change in symptoms domains.

Traducción y adaptación al castellano del cuestionario de calidad de vida relacionado con el síndrome de apnea-hipopnea del sueño Quebec Sleep Questionnaire / Translation and adaptation to Spanish language of the quality of life questionnaire for sleep apnea-hipopnea syndrome Quebec Sleep Questionnaire

Fundamento y objetivo: El objetivo del estudio es realizar la traducción y adaptación al castellano del cuestionario Quebec Sleep Questionnaire (QSQ). Método: Para la adaptación transcultural del QSQ se ha utilizado la técnica de retrotraducción. Un psicólogo y un neumólogo hicieron una primera traducción del cuestionario. Se puntuó de forma independiente la naturalidad/corrección de los ítems y la equivalencia conceptual y se pasó el cuestionario a un grupo de pacientes. Se remitió al autor una retrotraducción al inglés. Resultados: La mayoría de los ítems tuvieron una dificultad mínima en la traducción. Tan solo en 4 de ellos (ítems 2, 7, 8, 30) la dificultad fue moderada. La naturalidad/corrección fue máxima en casi todos los ítems excepto en 4 que, sin embargo, era excelente (de 8 a 9 puntos). La equivalencia conceptual fue completa en todos menos en el ítem 2, en el que fue parcialmente equivalente. Conclusiones: Se ha realizado la primera traducción y adaptación al castellano del cuestionario de calidad de vida QSQ. La traducción tiene una dificultad mínima y su equivalencia conceptual es prácticamente completa (AU)

Background and objective: The objective of this study was to translate and adapt to Spanish the Québec Sleep Questionnaire (QSQ).Methods: For QSQ tran-cultural adaptation, the back-translation technique was used. A psychologist and a pneumonologist made a first translation of the questionnaire. Naturalness-correctness of items and conceptual equivalence were evaluated by external researchers and a group of patients. A back-translation was finally remitted to author. Results: Most of the items had minimal difficulty in translation. The difficulty was moderate in only 4 of them (items 2, 7, 8, 30). Naturalness-correctness was maximal in most items and excellent in 4 (8 to 9 points). The conceptual equivalence was complete in all the items, except item 2 that showed a partial equivalence. Conclusions: The first translation and adaptation to Spanish language of the quality of life questionnaire QSQ has been done. The translation has minimal difficulty and the conceptual equivalence is almost complete (AU)

Consistencia interna y validez de la versión española del cuestionario de calidad de vida específico para el síndrome de apneas-hipopneas del sueño Quebec Sleep Questionnaire / Internal Consistency and Validity of the Spanish Version of the "Quebec Sleep Questionnaire" Quality-of-Life Questionnaire for Obstructive Sleep Apnea

Introducción: No existe ningún cuestionario específico de calidad de vida validado en castellano para su uso en pacientes con síndrome de apneas-hipopneas durante el sueño (SAHS). El objetivo del presente estudio fue validar la versión castellana del Quebec Sleep Questionnaire (QSQ). Material y métodos: Estudio multicéntrico en un grupo de pacientes diagnosticados de SAHS (IAH≥5) enviados a las Unidades de Sueño. En todos los pacientes se administraron los cuestionarios: SF-36, FOSQ, QSQ y test de Epworth. Se evaluaron las propiedades psicométricas (consistencia interna, validez de constructo, validez concurrente, validez predictora, fiabilidad test-retest y sensibilidad al cambio) del cuestionario QSQ (32 ítems en cinco dominios: somnolencia diurna, síntomas diurnos, síntomas nocturnos, emociones e interacciones sociales). Resultados: Se incluyeron 121 pacientes (edad media: 57±13 años; Epworth: 9±4; IMC 28±3kg·m−2 e IAH 36±20h−1). El análisis factorial mostró un constructo de cinco factores, distribuidos de manera similar a los dominios del cuestionario original. Tanto la consistencia interna (alfa de Cronbach entre 0,78 y 0,93 para los distintos dominios), la validez concurrente con respecto al SF-36, Epworth y FOSQ, la validez predictora de gravedad del SAHS, como la fiabilidad test-retest fueron adecuadas. El QSQ mostró una buena sensibilidad al cambio en los dominios relativos a los síntomas diurnos (p=0,003) y nocturnos (p=0,02). Conclusiones: La versión española del QSQ presenta unas características psicométricas adecuadas para su utilización en pacientes con SAHS, así como una sensibilidad al cambio significativa en los dominios de síntomas(AU)

Introduction: There is no specific health-related quality of life (HRQL) questionnaire that has been validated in Spanish for its use in patients with sleep apnea-hypopnea syndrome (SAHS). The objective of the present study was to validate the Spanish version of the Quebec Sleep Questionnaire (QSQ). Patients and methods: A multi-center study including a group of patients with SAHS (AHI≥5) referred to the Sleep Unit. All patients completed the following questionnaires: SF-36, FOSQ, QSQ and Epworth scale. Internal consistency, construct validity, concurrent validity, predictive validity, repeatability and responsiveness to change of the QSQ (32 items in five domains: daytime sleepiness, diurnal symptoms, nocturnal symptoms, emotions, and social interactions) were assessed. Results: A hundred twenty one patients were included in the study (mean age: 57±13; mean Epworth: 9±4; mean Body Mass Index (BMI): 28±3kg·m−2 and mean AHI: 36±20hour−1). The factorial analysis showed a construct of five factors with similar distribution to the original questionnaire domains. Internal consistency (Cranach's alpha between 0.78 and 0.93 for the different domains), concurrent validity (compared to SF-36, Epworth scale and FOSQ), predictive validity of SAHS severity and test-retest reliability were appropriate. The test showed good responsiveness to change in diurnal (P=.003) and nocturnal symptoms domains (P=.02). Conclusions: The Spanish version of the QSQ is a valid HRQL measure with appropriate psychometric properties for use in patients with SAHS and is responsive to change in symptoms domains(AU)