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      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

      research-article
      Author(s): 1 , , 1 , 1
      Publication date (Electronic):
      Journal: BMC Public Health
      Publisher: BioMed Central

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          Abstract

          Background

          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.

          Methods

          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.

          Results

          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.

          Conclusion

          The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.

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          Most cited references65

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          Can parents rate their child's health-related quality of life? Results of a systematic review.

          C Eiser, R. Morse (2001)
          A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions: is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.
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            Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues.

            Louis Matza, Andrine Swensen, Emuella Flood … (2015)
            Recently, the FDA has encouraged testing of medications among pediatric patients during drug development. Pharmaceutical companies have responded by conducting more clinical trials among children, and researchers are becoming aware of the unique challenges of assessing pediatric health outcomes, including health-related quality of life (HRQL). Like adults, children experience effects of illness and treatment beyond physiologic outcomes. Further pediatric HRQL research is necessary to examine these broader psychosocial outcomes and provide a thorough understanding of the effects of treatment on children's health status. The purpose of the current review is to discuss key regulatory and methodologic developments and provide guidance for future research on pediatric HRQL. This review of pediatric HRQL assessment includes five sections: 1). recent pediatric regulatory developments in the United States; 2). issues in defining and conceptualizing pediatric HRQL, including the importance of contextual variables such as family and peer systems; 3). methodologic issues (e.g., the proxy question, developmental differences, response sets) with recommendations for addressing these issues in clinical trials; 4). validated generic and condition-specific pediatric HRQL measures; and 5). a recommendation for additional research on the HRQL impact of childhood psychiatric disorders. It is advocated that assessment of HRQL among children should be conducted regularly as an integral part of drug development.
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              Evidence that school-age children can self-report on their health.

              Anne Riley (2004)
              The value of obtaining children's reports about their health from questionnaires is a topic of considerable debate in clinical pediatrics and child health research. Evidence from the following areas can inform the debate: 1) studies of parent-child agreement or concordance about the child's health state, 2) basic research on the development of children's cognitive abilities, 3) cognitive interviewing studies of children's abilities to respond to questionnaires and of influences on their responses, 4) psychometric studies of child-report questionnaires, and 5) longitudinal research on the value of children's reports. This review makes a case for the utility of child rather than parent-proxy reports for many, though not all, applications. The review summarizes evidence in terms of the value and limitations of child questionnaire reports. Research demonstrates adequate understanding and reliability and validity of child reports of their health even at age 6, which increases after age 7 in general populations. The reliability of reports by children 8-11 years old is quite good on health questionnaires developed especially for this age group. Children's personal reports provide a viable means of monitoring internal experiences of health and distress during childhood and adolescence, which can enhance understanding about trajectories of health and development of illnesses.
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                Author and article information

                Journal
                Journal ID (nlm-ta): BMC Public Health
                Title: BMC Public Health
                Publisher: BioMed Central
                ISSN (Electronic): 1471-2458
                Publication date Collection: 2008
                Publication date (Electronic): 17 December 2008
                Volume: 8
                Page: 414
                Affiliations
                [1 ]Institute of Nursing Science, Witten/Herdecke University, Stockumer StraSSe 12, 58453 Witten, Germany
                Article
                Publisher ID: 1471-2458-8-414
                DOI: 10.1186/1471-2458-8-414
                PMC ID: 2625356
                PubMed ID: 19091099
                SO-VID: 8ac069e7-c32f-4bfd-9c57-754f2e06601e
                Copyright © Copyright © 2008 Schlarmann et al; licensee BioMed Central Ltd.
                License:

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 1 August 2008
                Date accepted : 17 December 2008
                Categories
                Subject: Research Article

                ScienceOpen disciplines: Public health
                Data availability:
                ScienceOpen disciplines: Public health

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