Explaining parent-child (dis)agreement in generic and short stature-specific health-related quality of life reports: do family and social relationships matter?

Background: In the context of health-related quality of life (HrQoL) assessment in pediatric short stature, the present study aimed to examine the levels of agreement/disagreement between parents’ and children’s reports of generic and condition-specific HrQoL, and to identify socio-demographic, clinical and psychosocial variables associated with the extent and direction of parent-child discrepancies. Methods: This study was part of the retest phase of the QoLISSY project, which was a multicenter study conducted simultaneously in France, Germany, Spain, Sweden and UK. The sample comprised 137 dyads of children/adolescents between 8 and 18 years of age, diagnosed with growth hormone deficiency (GHD) or idiopathic short stature (ISS), and one of their parents. The participants completed child- and parent-reported questionnaires on generic (KIDSCREEN-10 Index) and condition-specific HrQoL (QoLISSY Core Module). Children/adolescents also reported on social support (Oslo 3-items Social Support Scale) and parents assessed the parent-child relationships (Parental Role subscale of the Social Adjustment Scale) and burden of short stature on parents (QoLISSY- additional module). Results: The parent-child agreement on reported HrQoL was strong (intraclass correlation coefficients between .59 and .80). The rates of parent-child discrepancies were 61.5 % for generic and 35.2 % for condition-specific HrQoL, with the parents being more prone to report lower generic (42.3 %) and condition-specific HrQoL (23.7 %) than their children. The extent of discrepancies was better explained by family and social relationships than by clinical and socio-demographic variables: poorer parent-child relationships and better children’s social support were associated with larger discrepancies in generic HrQoL, while more parental burden was associated with larger discrepancies in condition-specific HrQoL reports. Regarding the direction of discrepancies, higher parental burden was significantly associated with parents’ underrating, and better children’s social support was significantly associated with parents’ overrating of condition-specific HrQoL. Conclusions: Routine assessment of pediatric HrQoL in healthcare and research contexts should include child- and parent-reported data as complementary sources of information, and also consider the family and social context.This study is part of the “Quality of Life in Short Stature Youth” (QoLISSY) project, a joint initiative between the University Medical Centre Hamburg-Eppendorf and ©Pfizer Limited

The assessment of mood at workplace - psychometric analyses of the revised Profile of Mood States (POMS) questionnaire

With the Profile of Mood States (POMS), a German version of an international instrument for the assessment of mood is available. The paper introduces a new short version containing 24 items and four scales. In a study about indoor climate in 4596 office workers only a few missing values were noted. Psychometric analyses showed very good characteristics of the four scales regarding their internal consistency (Cronbach’s α) and scale fit. High floor effects indicated a limited exhaustion of the scale range. Age and gender effects of the scale scores concerned the scales “vigour” and “fatigue”. Furthermore, the scales of the POMS discriminated between groups with different self-reported disease incidences. A less beneficial characteristic of the POMS could be noted in terms of a high correlation of the scales “numbness” and “fatigue". With the tested version of the POMS, a short instrument with good psychometric properties has been presented which can be assessed in healthy as well as in health-impaired persons

Psychological and Quality of Life Outcomes in Pediatric Populations: A Parent-Child Perspective

To compare the levels of quality of life (QoL) and psychological adjustment of children with different chronic health conditions with healthy children; to compare the QoL of parents of children with a chronic condition with parents of healthy children; and to examine the role of parents' QoL and children's psychological adjustment (ie, internalizing/externalizing problems) on children's QoL

Measuring subjective health in children and adolescents: results of the European KIDSCREEN/DISABKIDS Project

Objectives: Currently there is a lack of information regarding the health-related quality of life (HRQoL) of healthy as well as chronically ill children on a European level. In 2 European projects questionnaires for the assessment of the HRQoL in children and adolescents have been developed: The KIDSCREEN project aims at a co-operative European development of a standardised screening instrument for children's HRQoL for the implementation in representative national and European health surveys. In the DISABKIDS project a chronic-generic questionnaire as well as modules for specific conditions (e.g. asthma) were developed for children with chronic conditions

Adaptation of the generic DISABKIDS® module for Brazilian children and adolescents with chronic disorders

OBJECTIVES: to describe the process of cultural adaptation to Brazil Generic Module DISABKIDS for Chronic Conditions (DCGM-37), a generic instrument for measuring the quality of life of children and adolescents with chronic conditions. METHODS: a cross-cutting methodological study was carried out in pediatric outpatients clinics in Brazil, covering 118 children/adolescents with asthma or diabetes and their parents or carers. Translation, back-translation and cultural adaptation were carried out to obtain conceptual and semantic equivalence at the level of individual items.Equivalence was measured statistically by describing the initial psychometric properties, using validity and reliability criteria. RESULTS: most of the items were considered relevant and 14 of them were modified following the semantic validation phase. Values for Cronbach's alpha were α=0.92 and α=0.93, for the version for children and adolescents and the version for parents and carers, respectively. Analysis of correlations between items and dimensions revealed a satisfactory degree of convergent and discriminant validity. CONCLUSIONS: the initial phase indicates that DISABKIDS module is a valid and reliable tool for measuring quality of life in a Brazilian context.OBJETIVOS: descrever o processo de adaptação cultural para o Brasil do Módulo Genérico DISABKIDS para Condicões Crônicas (DCGM-37), um instrumento genérico para mensuração da qualidade de vida de crianças e adolescentes com condições crônicas. MÉTODOS: estudo metodológico, transversal, conduzido em ambulatórios pediátricos brasileiros, incluindo 118 crianças/adolescentes com asma ou diabetes e seus pais/cuidadores. Os processos de tradução-retrotradução e adaptação cultural foram realizados visando a obter equivalência conceitual e semântica em nível de itens. A equivalência de medida foi avaliada por análise estatística, realizada para descrição das propriedades psicométricas iniciais, segundo os critérios de validade e confiabilidade. RESULTADOS: a maioria dos itens foi considerada relevante e 14 deles foram modificados após a fase de validação semântica. Valores para a estatística alfa de Cronbach foram α=0,92 e α=0,93, para a versão crianças/adolescentes e pais/cuidadores respectivamente. A análise das correlações entre itens e dimensões mostrou validade convergente e discriminante satisfatórias. CONCLUSÕES: a fase inicial indica que o instrumento deverá constituir ferramenta válida e confiável para mensuração da qualidade de vida na realidade brasileira.Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)Universidade Federal de São Paulo (UNIFESP)Universidade Federal do Rio Grande do Sul Departamento de Odontologia Preventiva e SocialUniversidade de São Paulo Escola de Enfermagem de Ribeirão PretoUniversitätsklinikum Hamburg-Eppendorf Instituto e Policlínica de Medicina PsicológicaUNIFESPSciEL

Enhancing medical students\u27 communication skills: development and evaluation of an undergraduate training program

BACKGROUND: There is a relative lack of current research on the effects of specific communication training offered at the beginning of the medical degree program. The newly developed communication training Basics and Practice in Communication Skills was pilot tested in 2008 and expanded in the following year at the University Medical Centre Hamburg-Eppendorf in Germany. The goal was to promote and improve the communicative skills of participants and show the usefulness of an early offered intervention on patient-physician communication within the medical curriculum. METHODS: The students participating in the project and a comparison group of students from the standard degree program were surveyed at the beginning and end of the courses. The survey consisted of a self-assessment of their skills as well as a standardised expert rating and an evaluation of the modules by means of a questionnaire. RESULTS: Students who attended the communication skills course exhibited a considerable increase of communication skills in this newly developed training. It was also observed that students in the intervention group had a greater degree of self-assessed competence following training than the medical students in the comparison group. This finding is also reflected in the results from a standardised objective measure. CONCLUSIONS: The empirical results of the study showed that the training enabled students to acquire specialised competence in communication through the course of a newly developed training program. These findings will be used to establish new communication training at the University Medical Centre Hamburg-Eppendorf

Preliminary psycometric assessment of the Brazilian version of the DISABKIDS Atopic Dermatitis Module

OBJECTIVE: To assess preliminary psychometric properties of the Brazilian Portuguese version of a questionnaire for measuring health-related quality of life in children and adolescents with atopic dermatitis. METHODS: Cross-sectional study with a sample consisting of 52 children and adolescents aged 8 to 18 diagnosed with atopic dermatitis, and their parents or caregivers, selected at the dermatology department of a university hospital in the city of São Paulo, Southeast Brazil, in 2009. Construct validity, internal consistency and agreement between the responses of children and adolescents and their parents or caregivers were assessed in the Brazilian Portuguese version of the DISABKIDS-Atopic Dermatitis Module (ADM). RESULTS: Adequate internal consistency was found with Cronbach's alpha coefficients of 0.7024/0.8124 and 0.7239/0.8604. The multitrait multimethod analysis for assessing convergent validity showed measures higher than 0.30 for all items. The analysis showed good discriminant validity. Agreement between child self-report and parent proxy-report was evaluated using intra-class correlation with measures impact and social stigma of disease of 0.8173 and 0.7629, respectively. CONCLUSIONS: The study results showed that the DISABKIDS-ADM can be used by Brazilian researchers after its complete validation as it showed adequate preliminary psychometric properties and can be considered a valid, reliable instrument.OBJETIVO: Analizar las propiedades psicométricas iniciales de la versión brasileña de instrumento de evaluación de cualidad de vida relacionada con la salud de niños y adolescentes con dermatitis atópica. MÉTODOS: Estudio transversal realizado con muestra de 52 niños y adolescentes, con edades entre ocho y 18 años, diagnosticados con dermatitis atópica, y sus responsables, reclutados en servicio de dermatología de hospital universitario en la ciudad de Sao Paulo, Sureste de Brasil, en 2009. Se evaluaron la validez del constructo, la confiabilidad de consistencia interna y la correlación entre las respuestas de niños y adolescentes y sus responsables de la versión brasileña del Atopic Dermatitis Module (DISABKIDS-ADM). RESULTADOS: La confiabilidad de consistencia interna fue satisfactoria, con coeficiente alfa de Cronbach aceptables para las dimensiones constantes en el instrumento (0,7024/0,8124 y 0,7239/0,8604). El análisis multitrazo-multimétodo para validez convergente mostró valores mayores a 0,30 para todos los ítems. Con relación a la validez discriminante, el análisis reveló resultados satisfactorios. La concordancia entre las versiones self y proxy fue evaluada por el coeficiente de correlación intraclase, con valores de 0,8173 para impacto y 0,7629 para estigma. CONCLUSIONES: Frente a los resultados encontrados, se considera que el instrumento DISABKIDS-ADM puede ser utilizado por investigadores brasileños después de finalizar su proceso de validación, dado que sus resultados iniciales apuntan propiedades psicométricas satisfactorias, que permiten considerarlo un instrumento valido y confiable.OBJETIVO: Analisar as propriedades psicométricas iniciais da versão brasileira de instrumento de avaliação da qualidade de vida relacionada à saúde de crianças e adolescentes com dermatite atópica. MÉTODOS: Estudo transversal realizado com amostra de 52 crianças e adolescentes, com idades entre oito e 18 anos, diagnosticados com dermatite atópica, e seus responsáveis, recrutados em serviço de dermatologia de hospital universitário na cidade de São Paulo, SP, em 2009. Foram avaliadas a validade de construto, a confiabilidade de consistência interna e a correlação entre as respostas de crianças e adolescentes e seus responsáveis da versão brasileira do Atopic Dermatitis Module (DISABKIDS-ADM). RESULTADOS: A confiabilidade de consistência interna foi satisfatória, com coeficiente alfa de Cronbach aceitável para as dimensões constantes no instrumento (0,7024/0,8124 e 0,7239/0,8604). A análise multitraço-multimétodo para validade convergente mostrou valores maiores que 0,30 para todos os itens. Quanto à validade discriminante, a análise revelou resultados satisfatórios. A concordância entre as versões self e proxy foi avaliada pelo coeficiente de correlação intra-classe, com valores de 0,8173 para impacto e 0,7629 para estigma. CONCLUSÕES: Diante dos resultados encontrados, considera-se que o instrumento DISABKIDS-ADM pode ser utilizado por pesquisadores brasileiros depois de finalizado seu processo de validação, por seus resultados iniciais apontarem propriedades psicométricas satisfatórias, que permitem considerá-lo um instrumento válido e confiável

Validade do instrumento DISABKIDS®- Módulo Fibrose Cística para crianças e adolescentes brasileiros

El objetivo de los autores de este artículo es validar el instrumento de mensuración de calidad de vida relacionada a la salud DISABKIDS®-Módulo Fibrosis Cística para niños y adolescentes (versión self) brasileños

Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States.

BACKGROUND: The European Quality of Life in Short Stature Youth (QoLISSY) is a novel condition-specific instrument developed to assess health related quality of life (HrQoL) in children/adolescents with short stature from patient and parent perspectives. Study objective was to linguistically validate and psychometrically test the American-English version of the QoLISSY instrument. METHODS: Upon conversion of the British-English version to American-English, content validity and acceptance of the questionnaire were examined through focus group discussions with cognitive debriefing in 28 children/adolescents with growth hormone deficiency (GHD) or idiopathic short stature (ISS) and their parents. In the subsequent field test with 51 families and a re-test with 25 families the psychometric performance of the American-English version was examined and compared with the original European dataset. RESULTS: Pilot test results supported the suitability of the American-English version. Good internal consistency with Cronbach\u27s Alpha ranging from 0.84 to 0.97 and high test-re-test reliabilities were observed in the field test. The QoLISSY was able to detect significant differences according to the degree of short stature with higher HrQoL for taller children. Correlations with a generic HrQoL tool support the QoLISSY\u27s concurrent validity. The scale\u27s operating characteristics were comparable to the original European data. CONCLUSION: Results support that the QoLISSY American-English version is a psychometrically sound short stature-specific instrument to assess the patient- and parent- perceived impact of short stature. The QoLISSY instrument is fit for use in clinical studies and health services research in the American-English speaking population