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      A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

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          Abstract

          Purpose

          The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries.

          Methods

          Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project.

          Results

          The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer–patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time.

          Conclusion

          The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

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          Most cited references31

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          J J Cohen (1988)
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            Developing attributes for a generic quality of life measure for older people: preferences or capabilities?

            Current UK policy with respect to the provision of health and social care for older people suggests that greater integration is required. Economists' attempts to assist resource allocation decisions, however, are very health focused, with concentration on the use of health-related quality of life measures. This paper reports an attempt to determine attributes for a new index clearly focusing on quality of life for older people rather than health or other influences on quality of life. In-depth interviews were conducted with 40 purposively selected informants aged 65 and over in private households to explore their views about what is important to them in terms of quality of life. Data were analysed using Framework qualitative analysis. Initial discussions tended to concentrate upon factors influencing quality of life including activities, relationships, health, wealth and surroundings. Further probing and analysis suggested five conceptual attributes: attachment, role, enjoyment, security and control. The data also suggested that the quality of informants' lives was limited by the loss of ability to pursue these attributes. So, for example, it is not poor health in itself, which reduces quality of life, but the influence of that poor health upon each informant's ability to, say, be independent, that is important. Amartya Sen's work on functioning and capability is particularly pertinent here. Using this work, it is possible to interpret the five conceptual attributes as a set of functionings-important for older people in the UK in the 21st century-but noting that it is the capacity to achieve these functionings that appears to be of importance. This suggests that further development of this measure should focus on an index of capability rather than preference-based utility.
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              Changes in self-reported and parent-reported health-related quality of life in overweight children and adolescents participating in an outpatient training: findings from a 12-month follow-up study

              Background Health-related quality of life (HRQoL) was found to improve in participants of weight management interventions. However, information on moderately overweight youth as well as on maintaining HRQoL improvements following treatment is sparse. We studied the HRQoL of 74 overweight, but not obese participants (32.4% male, mean age = 11.61 ± 1.70 SD) of a comprehensive and effective six-month outpatient training at four time-points up to 12 months after end of treatment. Methods HRQoL was measured by self-report and proxy-report versions of the generic German KINDL-R, including six sub domains, and an obesity-specific additional module. Changes in original and z-standardized scores were analyzed by (2×4) doubly multivariate analysis of variance. This was done separately for self- and proxy-reported HRQoL, taking into account further socio-demographic background variables and social desirability. Additionally, correlations between changes in HRQoL scores and changes in zBMI were examined. Results There were significant multivariate time effects for self-reported and proxy-reported HRQoL and a significant time-gender interaction in self-reports revealed (p < .05). Improvements in weight-specific HRQoL were evident during treatment (partial η2 = 0.14-0.19). Generic HRQoL further increased after end of treatment. The largest effects were found on the dimension self-esteem (partial η2 = 0.08-0.09 for proxy- and self-reported z-scores, respectively). Correlations with changes in weight were gender-specific, and weight reduction was only associated with HRQoL improvements in girls. Conclusions Positive effects of outpatient training on generic and weight-specific HRQoL of moderately overweight (not obese) children and adolescents could be demonstrated. Improvements in HRQoL were not consistently bound to weight reduction. While changes in weight-specific HRQoL were more immediate, generic HRQoL further increased after treatment ended. An extended follow-up may therefore be needed to scrutinize HRQoL improvements due to weight management. Trial registration clinicaltrials.gov NCT00422916
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                Author and article information

                Contributors
                perryduxbury@eshpm.eur.nl
                vanexel@eshpm.eur.nl
                brouwer@eshpm.eur.nl
                anders.skoldunger@ki.se
                gpereira@nms.unl.pt
                kate.irving@dcu.ie
                gabriele.meyer@medizin.uni-halle.de
                geir.selbaek@aldringoghelse.no
                b.woods@bangor.ac.uk
                ozanetti@fatebenefratelli.eu
                f.verhey@maastrichtuniversity.nl
                anders.wimo@ki.se
                ron.handels@maastrichtuniversity.nl
                Journal
                Qual Life Res
                Qual Life Res
                Quality of Life Research
                Springer International Publishing (Cham )
                0962-9343
                1573-2649
                8 October 2019
                8 October 2019
                2020
                : 29
                : 1
                : 237-251
                Affiliations
                [1 ]GRID grid.6906.9, ISNI 0000000092621349, Erasmus School of Health Policy & Management, , Erasmus University Rotterdam, ; Rotterdam, The Netherlands
                [2 ]GRID grid.6906.9, ISNI 0000000092621349, Erasmus School of Economics, , Erasmus University Rotterdam, ; Rotterdam, The Netherlands
                [3 ]GRID grid.4714.6, ISNI 0000 0004 1937 0626, Karolinska Institutet, Department for Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, ; Solna, Sweden
                [4 ]GRID grid.10772.33, ISNI 0000000121511713, CEDOC, Chronic Diseases Research Centre NOVA Medical School/Faculdade de Ciências Médicas, , Universidade Nova de Lisboa, ; Lisbon, Portugal
                [5 ]GRID grid.15596.3e, ISNI 0000000102380260, School of Nursing and Human Sciences, , Dublin City University, ; Dublin, Ireland
                [6 ]GRID grid.9018.0, ISNI 0000 0001 0679 2801, Medical Faculty, Institute for Health and Nursing Science, , Martin Luther University Halle-Wittenberg, ; Magdeburger Straße 8, 06112 Halle (Saale), Germany
                [7 ]Norwegian National Advisory Unit ON Ageing and Health, Vestfold Health Trust, Tønsberg, Norway
                [8 ]GRID grid.55325.34, ISNI 0000 0004 0389 8485, Department of Geriatric Medicine, , Oslo University Hospital, ; Oslo, Norway
                [9 ]GRID grid.5510.1, ISNI 0000 0004 1936 8921, Faculty of Medicine, Institute of Clinical Medicine, , University of Oslo, ; Oslo, Norway
                [10 ]GRID grid.7362.0, ISNI 0000000118820937, Dementia Services Development Centre Wales (DSDC), , Bangor University, ; Bangor, UK
                [11 ]GRID grid.412966.e, ISNI 0000 0004 0480 1382, Alzheimer Center Limburg, Faculty of Health, Medicine and Life Sciences, School for Mental Health and Neuroscience, Department of Psychiatry and Neuropsychology, , Maastricht University Medical Center +, ; Maastricht, The Netherlands
                [12 ]GRID grid.8993.b, ISNI 0000 0004 1936 9457, Centre for Research & Development, , Uppsala University/County Council of Gävleborg, ; Gävle, Sweden
                [13 ]GRID grid.419422.8, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, ; Brescia, Italy
                Author information
                http://orcid.org/0000-0001-5293-2457
                http://orcid.org/0000-0002-4178-1777
                http://orcid.org/0000-0002-0476-8397
                http://orcid.org/0000-0001-8439-2248
                http://orcid.org/0000-0003-1419-1306
                http://orcid.org/0000-0001-6511-8219
                http://orcid.org/0000-0002-8307-8406
                http://orcid.org/0000-0003-0963-5750
                http://orcid.org/0000-0002-8663-0630
                Article
                2317
                10.1007/s11136-019-02317-3
                6962282
                31595452
                0b565ab5-57d0-44de-b7ce-578f1f11ca90
                © The Author(s) 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 24 September 2019
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100013278, EU Joint Programme – Neurodegenerative Disease Research;
                Categories
                Article
                Custom metadata
                © Springer Nature Switzerland AG 2020

                Public health
                construct validity,icecap-o,informal care,dementia,well-being
                Public health
                construct validity, icecap-o, informal care, dementia, well-being

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