Silvina Berra

Health-Related Quality of Life Measurement in Children and Adolescents:A Systematic Review of Generic and Disease-Specific Instruments

OBJECTIVE To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties. STUDY DESIGN Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust. RESULTS In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14). CONCLUSIONS The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.

Being bullied: Associated factors in children and adolescents 8 to 18 years old in 11 European countries

OBJECTIVES. To analyze the prevalence of bullying victims among children and adolescents aged 8 to 18 years in 11 European countries and to investigate the associated sociodemographic, physical, and psychosocial factors. METHODS. Being a bullying victim was measured by using the social acceptance (bullying) scale from the Kidscreen-52, a health-related quality-of-life questionnaire administered to 16 210 children and adolescents aged 8 to 18 and their parents in postal or school-based surveys in 11 European countries. Standardized mean differences (effect size) were computed to measure the percentage of children/adolescents scoring 1 SD below the mean on the Kidscreen bullying scale. Logistic regression models were used to determine which sociodemographic, physical, and psychosocial factors were associated with being bullied. RESULTS. The percentage of children being bullied was 20.6% for the entire sample, ranging from 10.5% in Hungary to 29.6% in the United Kingdom. In almost all countries the factors most strongly associated with being bullied were younger age, having probable mental health problems, having a low score on the Kidscreen-52 moods and emotions dimensions, and poor social support. Using the grand mean for all countries as the reference category, there was an above-average likelihood of children or adolescents reporting that they had been victims of bullying in 5 countries (Austria, Netherlands, Spain, Switzerland, and the United Kingdom), and a below-average likelihood in 3 countries (France, Greece, Hungary). CONCLUSIONS. This study indicated considerable variation between countries in the prevalence of those perceiving themselves to be victims of bullying but also revealed a clear profile of those likely to be bullied. The study also suggests that the Kidscreen bullying scale could be useful in identifying potential bullying victims.

Methods and representativeness of a European survey in children and adolescents: the KIDSCREEN study

BackgroundThe objective of the present study was to compare three different sampling and questionnaire administration methods used in the international KIDSCREEN study in terms of participation, response rates, and external validity.MethodsChildren and adolescents aged 8–18 years were surveyed in 13 European countries using either telephone sampling and mail administration, random sampling of school listings followed by classroom or mail administration, or multistage random sampling of communities and households with self-administration of the survey materials at home. Cooperation, completion, and response rates were compared across countries and survey methods. Data on non-respondents was collected in 8 countries. The population fraction (PF, respondents in each sex-age, or educational level category, divided by the population in the same category from Eurostat census data) and population fraction ratio (PFR, ratio of PF) and their corresponding 95% confidence intervals were used to analyze differences by country between the KIDSCREEN samples and a reference Eurostat population.ResultsResponse rates by country ranged from 18.9% to 91.2%. Response rates were highest in the school-based surveys (69.0%–91.2%). Sample proportions by age and gender were similar to the reference Eurostat population in most countries, although boys and adolescents were slightly underrepresented (PFR <1). Parents in lower educational categories were less likely to participate (PFR <1 in 5 countries). Parents in higher educational categories were overrepresented when the school and household sampling strategies were used (PFR = 1.78–2.97).ConclusionSchool-based sampling achieved the highest overall response rates but also produced slightly more biased samples than the other methods. The results suggest that the samples were sufficiently representative to provide reference population values for the KIDSCREEN instrument.

Fiabilidad y validez de la versión española del KIDSCREEN-52 para población infantil y adolescente

Fundamento y objetivo Analizar la fiabilidad y validez del KIDSCREEN-52, un nuevo cuestionario de calidad de vida relacionada con la salud (CVRS), desarrollado de forma transcultural para poblacion infantil y adolescente en 13 paises europeos. Sujetos y metodo El KIDSCREEN-52 se envio por correo a una muestra representativa de la poblacion espanola de entre 8 y 18 anos de edad. Se recogieron las caracteristicas sociodemograficas y se aplicaron otros cuestionarios de CVRS ademas del KIDSCREEN. Los padres respondieron a cuestionarios sobre necesidades en salud. Para el analisis de la fiabilidad y la validez se aplicaron tecnicas de analisis psicometrico clasicas, asi como la teoria de respuesta al item. En un 10% de la muestra se efectuo un retest al cabo de 2-4 semanas. Resultados La tasa de respuesta fue del 47% (n = 876 ninos/as). Los coeficientes alfa de Cronbach variaron entre 0,74 y 0,86, y el coeficiente de correlacion intraclase entre 0,55 y 0,79. El analisis Rasch mostro un ajuste satisfactorio de los items a cada una de las dimensiones (Infit media cuadratica de residuales [MSQ] = 0,7-1,2). El analisis factorial confirmatorio valido la estructura subyacente del modelo de 10 dimensiones (raiz cuadrada media del error de aproximacion [RMSEA] = 0,025; indice de ajuste comparativo [CFI] = 0,94). Las puntuaciones del KIDSCREEN fueron mejores en los chicos, en los mas jovenes, en los que no declararon necesidades en salud y en los de nivel socioeconomico mas favorecido. Conclusiones El KIDSCREEN-52 muestra aceptables niveles de fiabilidad y validez para la poblacion espanola de 8-18 anos. Futuros estudios tendran que evaluar la sensibilidad a los cambios y su aplicabilidad en diferentes condiciones clinicas.

Un instrumento para la evaluación de la atención primaria de salud desde la perspectiva de la población

Objective. To reduce, translate, and adapt transculturally, the short version of the PCAT questionnaire for users (PCAT Customer client version), in order to achieve an abbreviated version of the original instrument in Catalan and Castilian that is conceptually similar to the English original, culturally adequate and viable for use among the Spanish population, and useful for inclusion in the health surveys. Design. Translation and adaptation of one questionnaire. Three steps were followed: a) question selection; b) transcultural adaptation of the selected questions, by means of direct translations to Castilian and Catalan with subsequent re-translation to English; c) clarity, acceptability, and familiarity with content of the 2 pretest questionnaire versions were evaluated through cognitive interviews of persons with different profiles in the targeted population. Results. Fifteen questions were selected for the adult version and 24 for the <15 year-old version. These facilitated the identification of a primary health care provider and the collection of information on the dimensions of first contact, continuity of care, comprehensiveness of care and coordination. Conclusions. It is hoped that these instruments will be useful when included in the questionnaires of health surveys throughout Spain. The items selected facilitate evaluation of the degree to which primary health care succeeds as the first user contact with health services, maintains continuity of attention, coordinates and provides services, making them available when necessary. Furthermore, cultural competence will be evaluated.Objetivo Reducir, traducir y adaptar transculturalmente la version corta del cuestionario PCAT para usuarios (PCAT consumer client version) con el fin de conseguir una version abreviada del instrumento original, en catalan y castellano, para su uso en la poblacion espanola que sea de utilidad para incluir en las encuestas poblacionales de salud. Diseno Traduccion y adaptacion de un cuestionario. Emplazamiento Atencion primaria. Mediciones Fases: a) seleccion de preguntas; b) adaptacion transcultural de las preguntas seleccionadas mediante traduccion directa al castellano y catalan e inversa al ingles, y c) la claridad, la aceptabilidad y la familiaridad del contenido de las 2 versiones pretest de los cuestionarios fueron evaluadas mediante entrevistas cognitivas a personas de diferentes perfiles de la poblacion diana. Resultados principales Se seleccionaron 15 preguntas para la version para personas adultas y 24 para la version para menores de 15 anos, que permiten identificar a un proveedor de atencion primaria de salud y recoger informacion sobre las dimensiones del primer contacto, la continuidad, la extension y la coordinacion. Conclusion Los elementos seleccionados permitiran evaluar el grado en que la atencion primaria de salud cumple con sus atributos esenciales de ser el primer contacto del usuario con los servicios sanitarios, mantener la continuidad de la atencion, coordinar la atencion sanitaria, y disponer y proveer servicios considerados necesarios en este ambito. Adicionalmente, se podra evaluar tambien su competencia cultural. Son elementos factibles de introducir en encuestas de salud.

Adaptación transcultural del cuestionario KIDSCREEN para medir calidad de vida relacionada con la salud en población argentina de 8 a 18 años

BACKGROUND Health related quality of life (HRQOL) measures are increasingly used in research and clinical practice. The KIDSCREEN is a questionnaire developed in Europe for an 8 to 18 year-old population. OBJECTIVE To cross-culturally adapt this questionnaire for the Argentinean population, and to evaluate its cultural adequacy and semantic equivalence against the original version. METHODS Forward and backward translation according to international recommendations for cross-cultural adaptation of questionnaires, including the translation by professional linguists, cognitive interviews with people of different ages, gender and socioeconomic status to analyze cultural adequacy, and comparison of the Argentinean with the original versions to establish semantic equivalence. RESULTS The language required adaptation in the use of pronouns and verb tenses. Most of the items were considered to have low translation difficulty and high semantic equivalence. Boys and girls 8-11 years (n= 7), 12-15 years (n= 7), and 16-18 years (n= 2) participated in the interviews, as well as 6 mothers. There were no major difficulties in understanding, but younger children being in the lower socioeconomic status had some difficulties to answer the questionnaire. Eight questions were modified to achieve greater semantic equivalence. CONCLUSIONS The Argentinean version of the KIDSCREEN questionnaire obtained through cross-cultural adaptation process, was equivalent to the European version. Future studies should establish its reliability and validity. It provides a useful measure of HRQOL for studies in clinical, school or community settings, with the possibility to establish international comparisons.

Instrumento para la lectura crítica y la evaluación de estudios epidemiológicos transversales

The aim was to develop a tool for the critical appraisal of epidemiological cross-sectional studies. Several recommendations or guidelines for assessing the strength of scientific evidence provided by observational studies were reviewed, like those from the Agency for Healthcare Research and Quality, the Scottish Intercollegiate Guidelines Group, the Osteba (Basque Office for Health Technology Assessment), and the STROBE Initiative. The tool has 27 items to assess: study question or objective, participants, comparability between groups, definition and measure of main variables; analysis and confusion, results, conclusions, external validity and applicability, and conflict of interest. This tool can be used to critically appraise research papers or to rate evidence during the elaboration of systematic reviews.

Correlates of use of health care services by children and adolescents from 11 European countries

Objective:To examine the association between use of health care services and health status, sociodemographic, and health care system characteristics in children and adolescents from 11 European countries. Research Design:Cross-sectional surveys in representative samples included using phone or school-based sampling. Subjects:Children and adolescents aged 8–18 years and their parents. Questionnaires were administered in households or at schools in Austria, Czech Republic, France, Germany, Greece, Hungary, Poland, Spain, Switzerland, the Netherlands, and the United Kingdom. Main Outcome Measures:Any visit to (“access”) and number of visits (“intensity of use”) to health care professionals during the previous 12 months. Results:The study included 16,210 parent-child pairs. In a multivariate analysis, variables statistically associated with access included the following: health status (more disability days, more chronic conditions), sociodemographic characteristics (being younger, being female, having a higher socioeconomic status, or higher parental educational level), and health system variables (higher percentage of public health expenditure, widespread private health care coverage, pediatrician-led system). The strongest association was with disability days [odds ratio (OR) = 6.92; 95% confidence interval (CI) = 5.24–9.14 for 5–15 days]. In the “intensity of use” model, sociodemographic (being younger, strong social support) and health status (chronic conditions, disability days, psychiatric disorders, psychosomatic complaints, poor health-related quality of life) characteristics were associated with greater intensity of use. Health system variables were not significant in this model. Conclusions:The likelihood of contacting the health services is a function of health status, socioeconomic factors, and health system characteristics. Intensity of use among those having made contact is associated with health status and sociodemographic characteristics but not with health system characteristics.

Correlates of breastfeeding duration in an urban cohort from Argentina

Aim: To analyse factors associated with the duration of breastfeeding in a representative cohort of mothers and children, including socio‐demographic and cultural characteristics, breastfeeding antecedents, perinatal factors and perinatal healthcare practices. Methods: The study was conducted in the city of Cordoba, between 1993 and 1998. Mother‐child binomials from all public and private hospitals were asked to participate. Follow‐up consisted of home visits at 30 d, 6, 12, 24, 36, 48 and 50 mo. Information was obtained on 650 healthy newborns. Cessation of breastfeeding during the first 24 mo of life was analysed using the Kaplan‐Meier method, and factors associated with weaning were studied using Coxs proportional risk regression. Results. The median duration of breastfeeding was 4 mo. Factors associated with weaning were: the introduction of artificial formulas within 30 d postpartum [relative risk (RR) = 2.27; 95% confidence interval (CI) = 1.82–2.82]; breastfeeding of a previous child for less than 6 mo (RR=1.64; 95% CI = 1.32–2.02); delay in the first mother‐child contact for over 90 min (RR=1.50; 95% CI = 1.17–1.93); mothers having completed primary or partially completed secondary education (RR= 1.40; 95% CI = 1.01–1.92) or completed secondary education or higher (RR= 1.59; 95% CI = 1.14–2.22); primiparous mother (RR= 1.39; 95% CI = 1.12–1.74) and; the mother recalling having been breastfed for less than 6 mo (RR = 1.27; 95% CI = 1.01–1.61).

Assessment of primary care in health surveys: a population perspective

BACKGROUND The objective of this study was to evaluate the metric properties of a selection of items of the Primary Care Assessment Tool (PCAT) included into 2006 Catalonia Health Survey and adapted to evaluate experiences of primary care (PC) under population perspective. METHODS This was a cross-sectional study. The study population was composed of non-institutionalized residents of Catalonia over 15 years of age (n = 12,933). The instrument used was a 10-item selection of the adult users version of the PCAT (PCAT10-AE). We assessed internal consistency, correlation between items and performed exploratory factor analysis and external validity analysis. RESULTS The instrument presented adequate internal consistency (0.72). All items showed acceptable correlation with other items that constitute the scale. The single extracted factor explained 64% of the common variance in the responses, allowing the construction of a global index for evaluation of PC. We observed an association between better evaluation of PC and more satisfaction with the health system. CONCLUSIONS Metric analysis supported the integrity and general adequacy of this very short tool included in a population health survey. The global index proposed could be a good measure for assessing and monitoring the adequacy of part of the PC experiences in first-contact care and person-focused care over time, under population perspective. On the other hand, the loss of content as a consequence of the selection of items, suggesting use of the expanded versions of the PCAT-AE whenever a global evaluation of PC is desired and it is possible.