Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content

Rajmil, Luís; Herdman, Michael; Sanmamed, María-José Fernández de; Detmar, Symone; Bruil, J.; Ravens‐Sieberer, Ulrike; Bullinger, Monika; Siméoni, Marie-Claude; Auquier, Pascal

doi:10.1016/s1054-139x(03)00249-0

Cited by 172 publications

(150 citation statements)

References 15 publications

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“…Categories within the social and emotional dimensions are similar to other questionnaires (Vogels et al 1999;The KIDSCREEN Group Europe 2006), while categories within the physical dimension mostly reflect disease-specific issues. Notably, other questionnaires refer to more than three dimensions (e. g. Varni et al 1999), while this study kept to the three core dimensions represented in almost all HrQoL questionnaires (Rajmil et al 2004).…”

Section: Discussionmentioning

confidence: 99%

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

et al. 2016

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Introduction: Progress in diagnosis and treatment of patients with intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders, organic acidurias or maple syrup urine disease is resulting in a growing number of long-term survivors. Consequently, health-related quality of life (HrQoL) of patients is increasingly regarded as a meaningful outcome parameter. To develop the first validated, disease-specific HrQoL questionnaire for IT-IEM, patients and parents were interviewed as content experts to identify major physical and psychosocial constraints and resources.Methods: Focus group interviews with 19 paediatric IT-IEM patients and 26 parents were conducted in four metabolic centres in Austria, Germany and Switzerland. Disease-specific HrQoL categories were established by qualitative content analysis.Results: Fourteen disease-specific topics related to the three well-established generic HrQoL dimensions of physi-

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Section: Discussionmentioning

confidence: 99%

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

et al. 2016

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“…Thus, the differences between the used HRQOL measurements must be especially emphasized. Even though all of the generic HRQOL measurements that are described in Table 2.3 cover physical, psychological and social HRQOL domains [39], the operationalization of these superordinate domains differ across measures [39; 46]. Hence, when interpreting the results of HRQOL studies, a detailed analysis of the HRQOL measures that are used is necessary.…”

Section: Parent Ratingsmentioning

confidence: 99%

Health-related quality of life among children with mental disorders: a systematic review

2012

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PURPOSE: To systematically review studies about the quality of life (QOL) of children with various mental disorders relative to healthy controls and to describe limitations in these studies. METH-ODS: Relevant articles were searched using different databases, by checking reference lists and contacting experts. We included articles that either compared children with mental disorders to healthy controls/norm values or made such a comparison possible. RESULTS: Sixteen out of 4,560 articles met the pre-defined inclusion criteria. These studies revealed that the QOL of children with various mental disorders is compromised across multiple domains. The largest effect sizes were found for psychosocial and family-related domains and for the total QOL score, whereas physical domains generally were less affected. The most important limitations in the existing literature include the lack of study samples drawn from the general population, the failure to use self-ratings, not considering item overlap between measuring QOL and assessing for the presence of a particular mental disorder, and not determining whether the children were receiving medication for their mental disorder. CONCLUSIONS: Children with mental disorders experience a considerable reduction in QOL across various domains. Research studies that avoid previous limitations are crucial to fill existing knowledge gaps. Results: Sixteen out of 4,560 articles met the pre-defined inclusion criteria. These studies revealed that the QOL of children with various mental disorders is compromised across multiple domains. The largest effect sizes were found for psychosocial and family-related domains and for the total QOL score, whereas physical domains generally were less affected.The most important limitations in the existing literature include the lack of study samples drawn from the general population, the failure to use self-ratings, not considering item overlap between measuring QOL and assessing for the presence of a particular mental disorder, and not determining whether the children were receiving medication for their mental disorder. Conclusions:Children with mental disorders experience a considerable reduction in QOL across various domains. Research studies that avoid previous limitations are crucial to fill existing knowledge gaps.

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“…Before the project KIDSCREEN there were no standardized cross-cultural relevant instruments for application with equivalence in paediatric populations in different European populations from different countries (Rajmil et al, 2004;RavensSieberer et al, 2001;Ravens-Sieberer et al, 2005). Apart from that, the subjective health has been considered of utmost importance to consider the state of health in national samples in international studies and regarding the measurement of perceptual indicators of health, namely the collaborative study of the World Health Organization (WHO), Health Behaviour in School Aged Children ([HBSC], Currie, Hurrelmann, Settertobulte, Smith, & Todd, 2000;Currie et al, 2004;Currie, Samdal, Boyce, & Smith, 2001;Matos et al, 2000Matos et al, , 2003Ravens-Sieberer et al, 2009).…”

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confidence: 99%

“…Some studies associate the perception of well-being and personal happiness to having less risk behaviours and more protective health ones (Currie et al, 2008;Currie et al, 2000;Currie et al, 2004;Currie et al, 2001;Matos et al, 2003;. Rajmil et al (2004) claimed that the concept of healthrelated quality of life in children and adolescents is not clearly defined, they underwent a literature review on generic and specific instruments for measuring the quality of life related to health, pointing out differences between definitions: the domains were almost always the same but they were distinctly operationalized. In the initial phase of the KIDSCREEN project development -that meant to create a new European instrument for measuring the health-related quality of life in children and adolescents -the authors argued that all questionnaires should include items from physical, psychological and social domains but the distribution of the number of items varied considerably between areas (Ravens-Sieberer et al, 2001).…”

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confidence: 99%

Health-related quality of life in portuguese children and adolescents

Matos¹,

Gaspar²,

Simões³

2012

Psicol. Reflex. Crit.

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The KIDSCREEN is a European cross-cultural and standardized instrument that assesses ten quality of life dimensions in children, adolescents and their parents. This instrument is used to validate evidences to support general inferences on quality-of-life measures obtained by the Portuguese version of KIDSCREEN-10 for children and adolescents, in the context of a survey research carried on in Portugal. The present study focuses only on the KIDSCREEN children and adolescents' versions. A sample of 8072 Portuguese children and adolescents attending the 5 th grade (19.3%), 6 th grade (19.2%), 7 th grade (20.3%), 8 th (21.6%) and 10 th grade (19.7%) in Portuguese schools were inquired, with a mean age of 13.2; SD 2.06, randomly distributed regarding gender. The Portuguese version of KIDSCREEN-10 instrument showed a good Internal Consistency of .78. Chosen fit indexes indicate good fit to the data. Specifically in the final solution the RMSEA was lower than .03 and the upper limit of 90% confidence interval was lower than .05, and CFI was higher than .95. Results indicated that the current 10-item structure is invariant across age groups, nationality and socio-economic level. The KIDSCREEN-10 questionnaire is a reliable instrument to estimate the perception of quality of life in children and adolescents. Psychometric guidelines are presented for the Portuguese population aged 10 to 16 years old. Keywords: Assessment, health-related quality of life, children and adolescents. ResumoO KIDSCREEN é um instrumento europeu transcultural e padronizado que avalia dez dimensões da qualidade de vida de crianças, adolescentes e seus pais. Este instrumento é usado para validar evidências a fim de apoiar inferências gerais sobre medidas de qualidade de vida obtidas pela versão portuguesa do KIDSCREEN-10 para crianças e adolescentes, no contexto de uma pesquisa de investigação feita em Portugal. O presente estudo centra-se apenas na versão KIDSCREEN para adolescentes e crianças. Uma amostra de 8.072 crianças e adolescentes portugueses frequentando a 5ª série (19,3%), 6ª série (19,2%), 7ª série (20,3%), 8ª série (21,6%) e 10ª série (19,7%) em escolas do país foram intrevistadas, com uma idade média de 13,2; DP 2,06, distribuídos aleatoriamente em relação ao sexo. A versão portuguesa do instrumento KIDSCREEN-10 mostrou uma boa consistência interna de 0,78. Os índices de ajuste escolhidos indicam bom ajuste aos dados. Especificamente na solução final o RMSEA foi inferior a 0,03, o limite superior do intervalo de confiança de 90% foi inferior a 0,05 e CFI foi superior a 0,95. Resultados indicaram que a estrutura atual do item 10 é invariável entre grupos de idade, nacionalidade e nível socio-econômico. O questionário KIDSCREEN-10 é um instrumento confiável para estimar a percepção da qualidade de vida em crianças e adolescentes. Orientações psicométricas são apresentadas para a população portuguesa entre 10 e 16 anos de idade. Palavras-chave: Avaliação, qualidade de vida relacionada à saúde, crianças e adolescentes.Children and ...

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Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content

Cited by 172 publications

References 15 publications

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

Health-related quality of life among children with mental disorders: a systematic review

Health-related quality of life in portuguese children and adolescents

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