RESUMO
This study aims to incorporate patients' perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers. The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life. Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients' needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians' information needs and patients' expectations.
Assuntos
Ataxia , Atitude Frente a Saúde , Participação do Paciente , Revisões Sistemáticas como Assunto , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ataxia/terapia , Técnica Delphi , Progressão da Doença , Correio Eletrônico , Projetos de Pesquisa , Inquéritos e Questionários , Resultado do TratamentoRESUMO
Los métodos semicualitativos y cualitativos permiten realizar una evaluación de los programas de formación médica continuada de una forma más profunda. Dichos métodos son de utilidad para responder a preguntas evaluativas del cómo y por qué de los fenómenos. Las técnicas de recogidas de datos más frecuentemente utilizadas son la observación, la entrevista, los grupos focales de discusión, el análisis de documentos y las encuestasen la bibliografía se han publicado múltiples estudios enlos que se ha utilizado una o varias de las técnicas enumeradas con el fin de evaluar el proceso, el impacto, las necesidades o las barreras de un programa de formación médica continuada (AU)
Semi-qualitative and qualitative methods make it possible to carry out a more thorough evaluation of continuing medical education programmes. These methods are useful to answer evaluative questions about how and why phenomena take place. The most commonly used data collection techniques are observation, interviews, focus group discussions, document analysis and surveys. The literature offers many examples of studies in which one or several of the above-mentioned techniques have been used to evaluate the process, the impact, the needs or the hindrances of a continuing medical education programme (AU)
Assuntos
Humanos , Educação Médica Continuada/normas , 25783RESUMO
AIM: To analyze the influence of several variables in the genesis of psychological morbidity in children with idiopathic nephrotic syndrome (INS) as compared with healthy controls. METHODS: The Strengths and Difficulties Questionnaire (SDQ) was administered to children with INS (n = 23) and a control group of healthy children (n = 38). The SDQ is a well-known screening instrument for psychological/psychiatric morbidity in childhood. The questionnaire consists of five scales that evaluate emotional symptoms, behavioral problems, hyperactivity, peer problems and prosocial behavior. The total score is calculated by adding all the subscales except the prosocial behavior scale. In children with INS, type of treatment, sex, steroid dose, disease stage, disease duration, and prognosis (number of relapses/disease stage) were also noted. RESULTS: Statistically significant differences were found in two of the scales (emotional symptoms and peer problems), as well as in the total score in children with INS as compared with the control group (p < 0.05). A positive correlation was found between disease duration and total score in the INS group. CONCLUSIONS: Emotional and behavioral problems were more frequent in children with INS. The only variable related to the severity of the symptoms studied in these children was disease duration.
Assuntos
Transtornos Mentais/etiologia , Síndrome Nefrótica/complicações , Criança , Feminino , Humanos , MasculinoRESUMO
Introducción Se analiza la influencia de diferentes parámetros en la sintomatología psicológica de los niños afectados de síndrome nefrótico idiopático (SNI) y se compara dicha sintomatología con los síntomas mentales presentes en un grupo de niños sanos (grupo control). Material y métodos Se ha administrado el Cuestionario de Cualidades y Dificultades (SDQ) a una muestra de niños afectados de SNI (n 23) y a un grupo control (n 38). El SDQ se utiliza como instrumento de detección de alteraciones psicológicas infantiles. Comprende 5 escalas que evalúan síntomas emocionales, problemas de conducta, hiperactividad, problemas con compañeros y conducta prosocial. Así mismo, se calcula una escala total de dificultades que se obtiene de la suma de todas las escalas excepto la conducta prosocial. En el grupo de niños con SNI se ha tenido en cuenta el tipo de tratamiento, el sexo, la evolución de la enfermedad, la dosis de esteroides, el tiempo de evolución de la enfermedad y la gravedad del cuadro. Resultados Existen diferencias estadísticas en la comparación entre ambos grupos en las escalas de síntomas emocionales, problemas con compañeros y en la escala total de dificultades (más sintomatología en el grupo de SNI) (p < 0,05). En los niños con SNI se observa correlación positiva entre la escala total y el tiempo de evolución de la enfermedad. Conclusiones Existe un incremento de la sintomatología emocional y del comportamiento en el grupo experimental en comparación con el grupo control. El tiempo de evolución de la enfermedad es la única variable relacionada con la intensidad de los síntomas estudiados en los niños con SNI
Aim To analyze the influence of several variables in the genesis of psychological morbidity in children with idiopathic nephrotic syndrome (INS) as compared with healthy controls. Methods The Strengths and Difficulties Questionnaire (SDQ) was administered to children with INS (n 23) and a control group of healthy children (n 38). The SDQ is a wellknown screening instrument for psychological/psychiatric morbidity in childhood. The questionnaire consists of five scales that evaluate emotional symptoms, behavioral problems, hyperactivity, peer problems and prosocial behavior. The total score is calculated by adding all the subscales except the prosocial behavior scale. In children with INS, type of treatment, sex, steroid dose, disease stage, disease duration, and prognosis (number of relapses/ disease stage) were also noted. Results Statistically significant differences were found in two of the scales (emotional symptoms and peer problems), as well as in the total score in children with INS as compared with the control group (p < 0.05). A positive correlation was found between disease duration and total score in the INS group. Conclusions Emotional and behavioral problems were more frequent in children with INS. The only variable related to the severity of the symptoms studied in these children was disease duration
