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      Recent advances in patient and proxy-reported quality of life research

      research-article
      Author(s): ,
      Publication date (Electronic):
      Journal: Health and Quality of Life Outcomes
      Publisher: BioMed Central

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          Abstract

          Background

          A number of articles addressing various aspects of health-related quality of life (HRQoL) were published in the Health and Quality of Life Outcomes (HQLO) journal in 2012 and 2013. This review provides a summary of studies describing recent methodological advances and innovations in HRQoL felt to be of relevance to clinicians and researchers.

          Methods

          Scoping review of original research articles, reviews and short reports published in the HQLO journal in 2012 and 2013. Publications describing methodological advances and innovations in HRQoL were reviewed in detail, summarized and grouped into thematic categories.

          Results

          358 titles and abstracts were screened initially, and 16 were considered relevant and incorporated in this review. Two studies discussed development and interpretation of HRQoL outcomes; two described pediatric HRQoL measurement; four involved incorporation of HRQoL in economic evaluations; and eight described methodological issues and innovations in HRQoL measures.

          Conclusions

          Several studies describing important advancements and innovations in HRQoL, such as the development of the PROMIS pediatric proxy-item bank and guidelines for constructing patient-reported outcome (PRO) instruments, were published in the HQLO journal in 2012 and 2013. Proposed future directions for the majority of these studies include extension and further validation of the research across a diverse range of health conditions.

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          Most cited references47

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          Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes.

          I B Wilson, P D Cleary (1995)
          Our model proposes a taxonomy or classification scheme for different measures of health outcome. We divide these outcomes into five levels: biological and physiological factors, symptoms, functioning, general health perceptions, and overall quality of life. In addition to classifying these outcome measures, we propose specific causal relationships between them that link traditional clinical variables to measures of HRQL. As one moves from left to right in the model, one moves outward from the cell to the individual to the interaction of the individual as a member of society. The concepts at each level are increasingly integrated and increasingly difficult to define and measure. AT each level, there are an increasing number of inputs that cannot be controlled by clinicians or the health care system as it is traditionally defined.
          Article 0 comments Cited 526 times – based on 0 reviews     Review now
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            Child/adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specificity.

            T Achenbach, S McConaughy, C T Howell (1987)
            Article 0 comments Cited 439 times – based on 0 reviews     Review now
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              The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries.

              Ulrike Ravens-Sieberer, Pascal Auquier, Michael Erhart … (2007)
              To assess the construct and criterion validity of the KIDSCREEN-27 health-related quality of life (HRQoL) questionnaire, a shorter version of the KIDSCREEN-52. The five-dimensional KIDSCREEN-27 was tested in a sample of 22,827. For criterion validity the correlation with and the percentage explained variance of the scores of the KIDSCREEN-52 instrument were examined. Construct validity was assessed by testing a priori expected associations with other generic HRQoL measures (YQOL-S, PedsQL, CHIP), indicators of physical and mental health, and socioeconomic status. Age and gender differences were investigated. Correlation with corresponding scales of the KIDSCREEN-52 ranged from r = 0.63 to r = 0.96, and r2 ranged from 0.39 to 0.92. Correlations between other HRQoL questionnaires and KIDSCREEN-27 dimensions were moderate to high for those assessing similar constructs (r = 0.36 to 0.63). Statistically significant and sizeable differences between physically and mentally healthy and ill children were found in all KIDSCREEN-27 dimensions together with strong associations with psychosomatic complaints (r = -0.52). Most of the KIDSCREEN-27 dimensions showed a gradient according to socio-economic status, age and gender. The KIDSCREEN-27 seems to be a valid measure of HRQoL in children and adolescents. Further research is needed to assess longitudinal validity and sensitivity to change.
              Article 0 comments Cited 222 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Kristofer Bandayrel: kris.bandayrel@utoronto.ca
                Bradley C Johnston: bradley.johnston@sickkids.ca
                Journal
                Journal ID (nlm-ta): Health Qual Life Outcomes
                Journal ID (iso-abbrev): Health Qual Life Outcomes
                Title: Health and Quality of Life Outcomes
                Publisher: BioMed Central (London )
                ISSN (Electronic): 1477-7525
                Publication date (Electronic): 29 August 2014
                Publication date PMC-release: 29 August 2014
                Publication date Collection: 2014
                Volume: 12
                Issue: 1
                Electronic Location Identifier: 110
                Affiliations
                [ ]Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Ontario Canada
                [ ]Department of Anesthesia and Pain Medicine, Hospital for Sick Children, Toronto, Ontario Canada
                [ ]Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario Canada
                [ ]Peter Gilgan Centre for Research and Learning, Hospital for Sick Children Research Institute, 686 Bay Street, Room 11.9848, Toronto, ON M5G 0A4 Canada
                Article
                Publisher ID: 110
                DOI: 10.1186/s12955-014-0110-7
                PMC ID: 4159521
                PubMed ID: 25169205
                SO-VID: 316dac34-1bd6-40a7-90f2-484fe4a6eb7a
                Copyright © © Bandayrel and Johnston; licensee BioMed Central Ltd. 2014
                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 credited.

                History
                Date received : 18 April 2013
                Date accepted : 24 June 2014
                Categories
                Subject: Review
                Custom metadata
                issue-copyright-statement © The Author(s) 2014

                ScienceOpen disciplines: Health & Social care
                Data availability:
                ScienceOpen disciplines: Health & Social care

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