Marta Aymerich

Desarrollo de la versión en español del KIDSCREEN: un cuestionario de calidad de vida para la población infantil y adolescente

Aims: To describe the cross-cultural development and psychometric properties of the Spanish version of the KIDSCREEN questionnaire, a health related quality of life instrument (HRQL) for use in children and adolescents aged 8-18 years old. The questionnaire was cross-culturally developed in 13 European countries. Methods: A literature review and Delphi study were performed, allowing consensus to be reached on the instrumentx90s contents and structure. More specific items and dimensions were generated in focus groups. Forward and back translation and cultural adaptation were carried out, together with a pre-test (cognitive debriefing) to select items that were acceptable in all the countries involved. A pilot study was performed to obtain the definitive version of the KIDSCREEN through Rasch analysis and preliminary information on the questionnairex90s psychometric properties. Results: The focus groups generated 1642 possible items, which were reduced during the stages of translation-adaptation and pilot study. The definitive version of the questionnaire contains 52 items and 10 dimensions. In the Spanish version, there was less than 5% nonequivalence (acceptability) in any of the dimensions, floor and ceiling effects were acceptable, and all dimensions had Cronbachx90s alpha values of > 0.70 (internal consistency). Conclusions: The KIDSCREEN is the first HRQL instrument for children and adolescents to be developed simultaneously in several countries. The preliminary psychometric properties of the Spanish version were acceptable.

Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL. Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL. Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL. Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context.

Cognitive psychosocial intervention in dementia: a systematic review.

Background: The evolution of dementia depends on the underlying pathology, early diagnosis and the availability of effective treatment for some of the symptoms that interfere with the patients or caregivers quality of life. Even though there is no specific treatment to reverse dementia, some interventions such as reality orientation and skills training can retard cognitive impairment. Aim: To review existing scientific evidence regarding the efficacy of therapies included in the category of cognition-oriented approaches for people suffering from dementia. Methods: Papers were retrieved from several bibliographic databases (last publication date: 2009) with pre-specified selection criteria, data extraction and methodological quality assessment. Results: Nine reality orientation and 8 skills training trials were identified as meeting the inclusion criteria. Conclusions: Stimulation of cognitive functions, especially by means of reality orientation, improves overall cognitive function in patients suffering from dementia.

Del conocimiento científico de la investigación clínica a la cabecera del enfermo: las guías de práctica clínica y su implementación

Las guias de practica clinica (GPC) estan dirigidas a profesionales y pacientes, y proporcionan informacion para la toma de decisiones. Tienen como proposito disminuir la variabilidad de la practica medica para garantizar un nivel optimo de calidad y mejorar asi la atencion sanitaria. Las GPC se basan en revisiones sistematicas de la literatura biomedica y recomiendan lineas de actuacion clinica de diferentes grados, segun la calidad de la evidencia cientifica en la que se sustentan. Sin embargo, debe tenerse en cuenta que el conocimiento cientifico es solo uno de los elementos que influyen en la practica medica. Asi pues, no es tarea facil recomendar una linea de actuacion en un contexto determinado (realidad) a partir de lo que ha sido investigado en condiciones bastante ideales (ensayo clinico aleatorizado); como tampoco lo es plasmar en una recomendacion los resultados de la investigacion, que depende del contexto (estudios de efectividad o de coste-efectividad). Estas dificultades siempre estaran presentes, porque cada paciente (y sus circunstancias) es diferente, pero pueden minimizarse si se llevan a cabo nuevos estudios que permitan reducir, un poco mas, la incertidumbre en la toma de decisiones clinicas. Finalmente, hay que comentar otra dificultad: conseguir la implementacion de las GPC y en esto aun queda mucho camino por recorrer en el area de las ciencias de la salud. Aun asi, seguro que si no hay un buen producto, de poco serviran las estrategias que permitan implementarlo. Por tanto, los esfuerzos deben concentrarse sobre todo en elaborar GPC de buena calidad.

Trade-offs in prenatal detection of Down syndrome.

OBJECTIVESnThis paper presents the results of different screening policies for prenatal detection of Down syndrome that would allow decision makers to make informed choices.nnnMETHODSnA decision analysis model was built to compare 8 screening policies with regard to a selected set of outcome measures. Probabilities used in the analysis were obtained from official administrative data reports in Spain and Catalonia and from data published in the medical literature. Sensitivity analyses were carried out to test the robustness of screening policies results to changes in uptake rates, diagnostic accuracy, and resources consumed.nnnRESULTSnSelected screening policies posed major trades-offs regarding detection rates, false-positive results, fetal loss, and costs of the programs. All outcome measures considered were found quite robust to changes in uptake rates. Sensitivity and specificity rates of screening tests were shown to be the most influential factors in the outcome measures considered.nnnCONCLUSIONSnThe disclosed trade-offs emphasize the need to comprehensively inform decision makers about both positive and negative consequences of adopting one screening policy or another.

Setting priorities in clinical and health services research: Properties of an adapted and updated method

OBJECTIVESnThe objectives of this study is to review the set of criteria of the Institute of Medicine (IOM) for priority-setting in research with addition of new criteria if necessary, and to develop and evaluate the reliability and validity of the final priority score.nnnMETHODSnBased on the evaluation of 199 research topics, forty-five experts identified additional criteria for priority-setting, rated their relevance, and ranked and weighted them in a three-round modified Delphi technique. A final priority score was developed and evaluated. Internal consistency, test-retest and inter-rater reliability were assessed. Correlation with experts overall qualitative topic ratings were assessed as an approximation to validity.nnnRESULTSnAll seven original IOM criteria were considered relevant and two new criteria were added (potential for translation into practice, and need for knowledge). Final ranks and relative weights differed from those of the original IOM criteria: research impact on health outcomes was considered the most important criterion (4.23), as opposed to burden of disease (3.92). Cronbachs alpha (0.75) and test-retest stability (interclass correlation coefficient = 0.66) for the final set of criteria were acceptable. The area under the receiver operating characteristic curve for overall assessment of priority was 0.66.nnnCONCLUSIONSnA reliable instrument for prioritizing topics in clinical and health services research has been developed. Further evaluation of its validity and impact on selecting research topics is required.

Measuring the payback of research activities: A feasible ex-post evaluation methodology in epidemiology and public health

Most ex-post evaluations of research funding programs are based on bibliometric methods and, although this approach has been widely used, it only examines one facet of the projects impact, that is, scientific productivity. More comprehensive models of payback assessment of research activities are designed for large-scale projects with extensive funding. The purpose of this study was to design and implement a methodology for the ex-post evaluation of small-scale projects that would take into account both the fulfillment of projects stated objectives as well as other wider benefits to society as payback measures. We used a two-phase ex-post approach to appraise impact for 173 small-scale projects funded in 2007 and 2008 by a Spanish network center for research in epidemiology and public health. In the internal phase we used a questionnaire to query the principal investigator (PI) on the outcomes as well as actual and potential impact of each project; in the external phase we sent a second questionnaire to external reviewers with the aim of assessing (by peer-review) the performance of each individual project. Overall, 43% of the projects were rated as having completed their objectives totally, and 40% considerably. The research activities funded were reported by PIs as socially beneficial their greatest impact being on research capacity (50% of payback to society) and on knowledge translation (above 11%). The method proposed showed a good discriminating ability that makes it possible to measure, reliably, the extent to which a projects objectives were met as well as the degree to which the project contributed to enhance the groups scientific performance and of its social payback.

Development of the Spanish version of the KIDSCREEN: a health-related quality of life instrument for children and adolescents

AIMSnTo describe the cross-cultural development and psychometric properties of the Spanish version of the KIDSCREEN questionnaire, a health related quality of life instrument (HRQL) for use in children and adolescents aged 8-18 years old. The questionnaire was cross-culturally developed in 13 European countries.nnnMETHODSnA literature review and Delphi study were performed, allowing consensus to be reached on the instruments contents and structure. More specific items and dimensions were generated in focus groups. Forward and back translation and cultural adaptation were carried out, together with a pre-test (cognitive debriefing) to select items that were acceptable in all the countries involved. A pilot study was performed to obtain the definitive version of the KIDSCREEN through Rasch analysis and preliminary information on the questionnaires psychometric properties.nnnRESULTSnThe focus groups generated 1642 possible items, which were reduced during the stages of translation-adaptation and pilot study. The definitive version of the questionnaire contains 52 items and 10 dimensions. In the Spanish version, there was less than 5% nonequivalence (acceptability) in any of the dimensions, floor and ceiling effects were acceptable, and all dimensions had Cronbachs alpha values of > 0.70 (internal consistency).nnnCONCLUSIONSnThe KIDSCREEN is the first HRQL instrument for children and adolescents to be developed simultaneously in several countries. The preliminary psychometric properties of the Spanish version were acceptable.

Of scientific knowledge of clinical research at the bedside: clinical practice guidelines and their implementation

Clinical practice guidelines (CPG) are targeted at health professionals and patients providing information for decision-making. They are aimed at reducing variations in medical practice in order to guarantee an optimum level of quality and improve health care. CPG are based on systematic reviews of biomedical literature and they recommend different clinical intervention strategies depending on the quality of scientific evidence on which they are based. However, we must bear in mind that scientific knowledge is only one of the elements that influence medical practice. Thus, it is not easy neither to recommend an intervention strategy for a specific circumstance (reality) from what has been studied in some rather ideal conditions (randomized controlled trial), nor to translate the context-dependent research evidence --effectiveness or cost-effectiveness studies- into a recommendation. These difficulties will be always present, as each patient (and his/her circumstances) is different from the others; but they can be lessened if more research is carried out to reduce uncertainty in clinical decision making. Finally, another difficulty that should be mentioned is that of CPG implementation, and in order to succeed in it, there is still much left to do in the health sciences field. Nevertheless, if there is not a good product to implement, the strategies used to do it will not be very helpful. Thus, we need to focus our efforts on the development of high quality CPG.

The use of clinical practice guidelines in primary care: professional mindlines and control mechanisms = El uso de guías de práctica clínica en atención primaria: entre el conocimiento tácito y los mecanismos de control

OBJECTIVEnTo identify the relevant barriers and enablers perceived by primary care professionals in implementing the recommendations of clinical practice guidelines (CPG).nnnMETHODSnTwo focus groups were conducted with primary care physicians and nurses in Catalonia (Spain) between October and December 2012. Thirty-nine health professionals were selected based on their knowledge and daily use of CPG. Finally, eight general practitioners and eight nurses were included in the discussion groups. Participants were asked to share their views and beliefs on the accessibility of CPG, their knowledge and use of these documents, the content and format of CPG, dissemination strategy, training, professional-patient relationship, and the use of CPG by the management structure. We recorded and transcribed the content verbatim and analysed the data using qualitative analysis techniques.nnnRESULTSnPhysicians believed that, overall, CPG were of little practical use and frequently referred to them as a largely bureaucratic management control instrument that threatened their professional autonomy. In contrast, nurses believed that CPG were rather helpful tools in their day-to-day practice, although they would like them to be more sensitive to the current role of nurses. Both groups believed that CPG did not provide a response to most of the decisions they faced in the primary care setting.nnnCONCLUSIONSnCompliance with CPG recommendations would be improved if these documents were brief, non-compulsory, not cost-containment oriented, more based on nursing care models, sensitive to the specific needs of primary care patients, and integrated into the computer workstation.