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      How can we support children, adolescents and young adults in managing chronic health challenges? A scoping review on the effects of patient education interventions

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          Abstract

          Objectives

          This scoping review aims to give a comprehensive and systematic overview of published evaluations and the potential impact of patient education interventions for children, adolescents and young adults who are living with chronic illness and/or impairment loss.

          Methods

          Relevant literature published between 2008 and 2018 has been comprehensively reviewed, with attention paid to variations in study, intervention and patient characteristics. Arksey and O'Malley's framework for scoping studies guided the review process, and thematic analysis was undertaken to synthesize extracted data.

          Results

          Of the 7214 titles identified, 69 studies were included in this scoping review. Participant‐reported benefits of the interventions included less distress from symptoms, improved medical adherence and/or less use of medication, and improved knowledge. The majority of studies measuring physical activity and/or physiologic outcomes found beneficial effects. Interventions were also beneficial in terms of decreased use of urgent health care, hospitalization, visits to general practitioner and absence from school. By sharing experiences, participants had learned from each other and attained new insight on how they could manage illness‐related challenges.

          Discussion

          Study results corroborate previous research suggesting that different types of patient education interventions have a positive impact on children, adolescents and young adults, but research on this field is still in a starting phase. The results summed up in the current review supports the utility of patient education interventions that employ behavioural strategies tailored to the developmental needs of children, adolescents and young adults with different cultural backgrounds.

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          Most cited references119

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          Guidance for conducting systematic scoping reviews.

          Reviews of primary research are becoming more common as evidence-based practice gains recognition as the benchmark for care, and the number of, and access to, primary research sources has grown. One of the newer review types is the 'scoping review'. In general, scoping reviews are commonly used for 'reconnaissance' - to clarify working definitions and conceptual boundaries of a topic or field. Scoping reviews are therefore particularly useful when a body of literature has not yet been comprehensively reviewed, or exhibits a complex or heterogeneous nature not amenable to a more precise systematic review of the evidence. While scoping reviews may be conducted to determine the value and probable scope of a full systematic review, they may also be undertaken as exercises in and of themselves to summarize and disseminate research findings, to identify research gaps, and to make recommendations for the future research. This article briefly introduces the reader to scoping reviews, how they are different to systematic reviews, and why they might be conducted. The methodology and guidance for the conduct of systematic scoping reviews outlined below was developed by members of the Joanna Briggs Institute and members of five Joanna Briggs Collaborating Centres.
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            EuroQol: the current state of play.

            R. Brooks (1996)
            The EuroQol Group first met in 1987 to test the feasibility of jointly developing a standardised non-disease-specific instrument for describing and valuing health-related quality of life. From the outset the Group has been multi-country, multi-centre, and multi-disciplinary. The EuroQol instrument is intended to complement other forms of quality of life measures, and it has been purposefully developed to generate a cardinal index of health, thus giving it considerable potential for use in economic evaluation. Considerable effort has been invested by the Group in the development and valuation aspects of health status measurement. Earlier work was reported upon in 1990; this paper is a second 'corporate' effort detailing subsequent developments. The concepts underlying the EuroQol framework are explored with particular reference to the generic nature of the instrument. The valuation task is reviewed and some evidence on the methodological requirements for measurement is presented. A number of special issues of considerable interest and concern to the Group are discussed: the modelling of data, the duration of health states and the problems surrounding the state 'dead'. An outline of some of the applications of the EuroQol instrument is presented and a brief commentary on the Group's ongoing programme of work concludes the paper.
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              Development and testing of a short form of the patient activation measure.

              The Patient Activation Measure (PAM) is a 22-item measure that assesses patient knowledge, skill, and confidence for self-management. The measure was developed using Rasch analyses and is an interval level, unidimensional, Guttman-like measure. The current analysis is aimed at reducing the number of items in the measure while maintaining adequate precision. We relied on an iterative use of Rasch analysis to identify items that could be eliminated without loss of significant precision and reliability. With each item deletion, the item scale locations were recalibrated and the person reliability evaluated to check if and how much of a decline in precision of measurement resulted from the deletion of the item. The data used in the analysis were the same data used in the development of the original 22-item measure. These data were collected in 2003 via a telephone survey of 1,515 randomly selected adults. Principal Findings. The analysis yielded a 13-item measure that has psychometric properties similar to the original 22-item version. The scores for the 13-item measure range in value from 38.6 to 53.0 (on a theoretical 0-100 point scale). The range of values is essentially unchanged from the original 22-item version. Subgroup analysis suggests that there is a slight loss of precision with some subgroups. The results of the analysis indicate that the shortened 13-item version is both reliable and valid.
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                Author and article information

                Contributors
                Role: Senior Researcheruna.stenberg@mestring.no
                Role: Co-researcher
                Role: Adviser
                Role: Associate Professor
                Role: Senior Adviser
                Role: User-representative
                Role: Senior Researcher
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                26 May 2019
                October 2019
                : 22
                : 5 ( doiID: 10.1111/hex.v22.5 )
                : 849-862
                Affiliations
                [ 1 ] Norwegian National Advisory Unit on Learning and Mastery in Health Oslo University Hospital Oslo Norway
                [ 2 ] Learning and Coping Center Oslo University Hospital Oslo Norway
                [ 3 ] Institute of Nursing, Faculty of Public Health Inland Norway University of Applied Sciences Elverum Norway
                [ 4 ] Celebral Palsy Young Oslo Norway
                Author notes
                [*] [* ] Correspondence

                Una Stenberg, Norwegian National Advisory Unit on Learning and Mastery in Health, Oslo University Hospital, Postboks 4959 Nydalen, 0424 Oslo, Norway.

                Email: una.stenberg@ 123456mestring.no

                Author information
                https://orcid.org/0000-0002-6007-8630
                Article
                HEX12906
                10.1111/hex.12906
                6803408
                31131527
                60477c37-88de-4bf1-aa64-7435d54729ca
                © 2019 The Authors Health Expectations published by John Wiley & Sons Ltd

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 January 2019
                : 20 March 2019
                : 18 April 2019
                Page count
                Figures: 1, Tables: 4, Pages: 14, Words: 11576
                Funding
                Funded by: Norwegian National Advisory Unit on Learning and Mastery in Health, Oslo University Hospital, Norway
                Categories
                Review Article
                Review Articles
                Custom metadata
                2.0
                hex12906
                October 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.7.0 mode:remove_FC converted:21.10.2019

                Health & Social care
                adolescents,children,evaluation,patient education,patient engagement,scoping review

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