The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature

<p>Abstract</p> <p>Background</p> <p>Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption.</p> <p>Methods</p> <p>The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children.</p> <p>Results</p> <p>HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate.</p> <p>Conclusion</p> <p>The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.</p

Sexuelle Gesundheit in Deutschland – Indikatoren als Instrumente zum Beschreiben, Planen und Evaluieren

Die Sektion Sexuelle Gesundheit der Deutschen STI-Gesellschaft (DSTIG) hat im Juni 2012 Indikatoren zur sexuellen Gesundheit in Deutschland verabschiedet. Diese Indikatoren, also Messgrößen, sollen es erlauben, den Zustand sexueller Gesundheit in Deutschland zu beschreiben, geeignete Maßnahmen für deren Verbesserung zu planen und deren Erfolg zu evaluieren. Ziel ist es, auf Grundlage von Vorlagen der Weltgesundheitsorganisation (WHO) eine logisch gegliederte, aussagekräftige und dennoch überschaubare Liste von Indikatoren zur sexuellen Gesundheit in Deutschland zu präsentieren. Dabei sollen die gewählten Indikatoren die deutsche Situation gut abbilden, aber dennoch eine hohe internationale Vergleichbarkeit gewährleisten. Mögliche Anwenderinnen und Anwender des Dokumentes sind Gesundheitsexpertinnen und -experten, politische Entscheidungsträgerinnen und -träger, Forscherinnen und Forscher sowie andere Akteurinnen und Akteure im Gesundheitswesen.In June 2012 the “Sexual Health” section of the German STI Society (DSTIG) adopted a set of indicators for sexual health in order to depict the sexual health status of people in Germany, as well as to plan and evaluate activities for the improvement of sexual health as a whole. The compiled indicators are measures for determining sexual health in Germany. A logical, convincingly conclusive and yet manageable list of indicators is presented on the basis of the draft submittals of the World Health Organization (WHO). The selected indicators reflect the German situation and are at the same time highly comparable internationally. Potential users of the document are health experts, policy developers, researchers, and other health care professionals

Monitoring und Qualitätssicherung von Prävention und Gesundheitsförderung auf Bundesebene

Das Monitoring und die Qualitätssicherung zur Ermittlung des Bedarfs und der Wirksamkeit von Präventions- und Gesundheitsförderungsmaßnahmen gewinnen zunehmend an Bedeutung. Der vorliegende Beitrag stellt exemplarisch diesbezügliche Aktivitäten auf Bundesebene vor, die von der Bundeszentrale für gesundheitliche Aufklärung und vom Robert Koch-Institut durchgeführt werden. Als Beispiele wurden die Präventionsthemen „HIV/Aids“, „Ernährung und Bewegung“ sowie „Kindergesundheit“ ausgewählt. Sie veranschaulichen die Rolle der epidemiologischen Surveillance, der Gesundheitsberichterstattung, der Evaluation und der Interventionsberichterstattung. Das Robert Koch-Institut und die Bundeszentrale für gesundheitliche Aufklärung liefern sich ergänzende Informationen zur Gesundheits- und Interventionsberichterstattung auf Bundesebene. Mit ihren Berichten stellen sie der Politik Entscheidungsgrundlagen zur Verfügung, um nationale Gesundheitsziele und Aktionspläne evidenzbasiert zu formulieren, umzusetzen und zu evaluieren.Monitoring and quality assurance are gaining in importance for the identification of needs and the effectiveness of prevention and health promotion activities. This paper presents examples of activities of monitoring and quality assurance at the federal level, carried out by the Federal Centre for Health Education and the Robert Koch Institute. Examples include the prevention issues “HIV/AIDS”, “nutrition and physical activity” and “child health”. They illustrate the roles of epidemiological surveillance, health monitoring, evaluation, and intervention reporting. The Robert Koch Institute and the Federal Centre for Health Education provide complementary information on health and intervention reporting at the federal level. With their reports, they provide essential information for health policy to formulate, to implement and to evaluate evidence-based national health goals and action plans

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

Purpose: To determine the extent of differences and similarities in content between heath-related quality of life (HRQOL) instruments for children and adolescents. Methods: A descriptive and explanatory qualitative approach was carried out. Instruments specifically designed for use with children or adolescents were included. To assure the validity of the findings a triangulation of the analysis and 'member checking' were performed. Results: Ten questionnaires were analyzed. All of them included items referring to physical, psychological, and social aspects of health. A relatively low number of categories explained the content of the questionnaires. Conclusions: A reasonably coherent notion of HRQOL underlies instruments available for children and adolescents. HRQOL measurement in young people is still in its developmental step. © Society for Adolescent Medicine, 2004

The KIDSCREEN-52 quality of life measure for children and adolescents: Psychometric results from a cross-cultural survey in 13 European countries

Objective: This study assesses the reliability and validity of the European KIDSCREEN-52 generic health-related quality of life (HRQoL) questionnaire for children and adolescents. Research Design: The KIDSCREEN-52, which measures HRQoL in 10 dimensions, was administered to a representative sample of 22,827 children and adolescents (8 to 18 years) in 13 European countries. Psychometric properties were assessed using the Classical Test Theory approach, Rasch analysis, and structural equation modeling (SEM). A priori expected associations between KIDSCREEN scales and sociodemographic and health-related factors were examined. Test-retest reliability was assessed in 10 countries. Results: For the overall sample, Cronbach's alpha values ranged from 0.77 to 0.89. Scaling success (Multitrait Analysis Program) was >97.8% for all dimensions and Rasch analysis item fit (INFITmsq) ranged from 0.80 to 1.27. The intraclass correlation coefficients ranged from 0.56 to 0.77. No sizeable differential item functioning (DIF) was found by age, sex or health status. Four items showed DIF across countries. The specified SEM fitted the data well (root mean square error of approximation: 0.06, comparative fit index: 0.98). Correlation coefficients between Pediatric Quality of Life Inventory, Child Health and Illness Profile-Adolescent Edition, and Youth Quality of Life Instrument scales and KIDSCREEN dimensions assessing similar constructs were moderate for those (r = 0.44 to 0.61). Statistically significant differences between children with and without physical and mental health problems (Children with Special Health Care Needs screener: d = 0.17 to 0.42, Strengths and Difficulties Questionnaire: d = 0.32 to 0.72) were found in all dimensions. All dimensions showed a gradient according to socioeconomic status. Conclusions: The KIDSCREEN-52 questionnaire has acceptable levels of reliability and validity. Further work is needed to assess longitudinal validity and sensitivity to change. © 2007, International Society for Pharmacoeconomics and Outcomes Research (ISPOR)