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      Long-Term Care for Tracheotomised Patients With or Without Invasive Ventilation. Lessons Learned from a Scoping Review of International Concepts

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          Abstract

          Introduction:

          Patients with long-term tracheostomies, with or without mechanical ventilation have complex and comprehensive healthcare needs. The number of patients is increasing internationally. Evidence suggests poor healthcare quality and outcomes, especially in Germany. Against this background, we searched for international concepts tailoring healthcare to these special needs, their key characteristics and results from their evaluations.

          Methods:

          A scoping review was performed in 2018 based on a systematic search of scientific databases and grey literature without restrictions to publication type. Key information was charted and thematically analysed based on the taxonomy of integrated care. Evaluations were analysed descriptively.

          Results:

          Seventy-nine publications related to 25 programmes from five countries were included. Healthcare concepts are usually regionally adapted and tertiary sector-based with a cross-sectoral approach. Care coordination responsibility is usually assigned to advanced nurse practitioners, embedded in multi-professional programme teams. Interventions consist of specialised needs-based clinical services combined with care coordination, homecare support and education. Evaluation of concepts is scarce, but existing results indicate beneficial effects on patient-related outcomes, care coordination, healthcare utilisation and costs.

          Conclusions:

          The concepts available in the literature are often poorly described and rarely evaluated. Research is needed on their impact on healthcare quality and outcomes. However, several key characteristics were identified, which should be considered when developing and implementing integrated and needs-based approaches for the patient group in Germany and beyond.

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          Most cited references28

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          Children with medical complexity: an emerging population for clinical and research initiatives.

          Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
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            In chronic condition: experiences of patients with complex health care needs, in eight countries, 2008.

            This 2008 survey of chronically ill adults in Australia, Canada, France, Germany, the Netherlands, New Zealand, the United Kingdom, and the United States finds major differences among countries in access, safety, and care efficiency. U.S. patients were at particularly high risk of forgoing care because of costs and of experiencing inefficient, poorly organized care, or errors. The Dutch, who have a strong primary care infrastructure, report notably positive access and coordination experiences. Still, deficits in care management during hospital discharge or when seeing multiple doctors occurred in all countries. Findings highlight the need for system innovations to improve outcomes for patients with complex chronic conditions.
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              Integrated care programmes for adults with chronic conditions: a meta-review

              Objective To review systematic reviews and meta-analyses of integrated care programmes in chronically ill patients, with a focus on methodological quality, elements of integration assessed and effects reported. Design Meta-review of systematic reviews and meta-analyses identified in Medline (1946–March 2012), Embase (1980–March 2012), CINHAL (1981–March 2012) and the Cochrane Library of Systematic Reviews (issue 1, 2012). Main Outcome Measures Methodological quality assessed by the 11-item Assessment of Multiple Systematic Reviews (AMSTAR) checklist; elements of integration assessed using a published list of 10 key principles of integration; effects on patient-centred outcomes, process quality, use of healthcare and costs. Results Twenty-seven systematic reviews were identified; conditions included chronic heart failure (CHF; 12 reviews), diabetes mellitus (DM; seven reviews), chronic obstructive pulmonary disease (COPD; seven reviews) and asthma (five reviews). The median number of AMSTAR checklist items met was five: few reviewers searched for unpublished literature or described the primary studies and interventions in detail. Most reviews covered comprehensive services across the care continuum or standardization of care through inter-professional teams, but organizational culture, governance structure or financial management were rarely assessed. A majority of reviews found beneficial effects of integration, including reduced hospital admissions and re-admissions (in CHF and DM), improved adherence to treatment guidelines (DM, COPD and asthma) or quality of life (DM). Few reviews showed reductions in costs. Conclusions Systematic reviews of integrated care programmes were of mixed quality, assessed only some components of integration of care, and showed consistent benefits for some outcomes but not others.
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                Author and article information

                Contributors
                Journal
                Int J Integr Care
                Int J Integr Care
                1568-4156
                International Journal of Integrated Care
                Ubiquity Press
                1568-4156
                17 July 2020
                Jul-Sep 2020
                : 20
                : 3
                Affiliations
                [1 ]Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Health and Nursing Science, Berlin, DE
                Author notes
                Corresponding author: Susanne Stark ( s.stark@ 123456charite.de )
                Article
                10.5334/ijic.5429
                7366865
                f8078ca0-2dc1-41e4-a3f1-69c28fa80738
                Copyright: © 2020 The Author(s)

                This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. See http://creativecommons.org/licenses/by/4.0/.

                Funding
                This research was part of a PHD project. Preliminary work was conducted in the context of the study VELA-Regio, funded by the German Federal Association of the AOK health insurance funds (AOK-Bundesverband) and registered in the German Health Services Research Database (VfD_VELA-Regio_15_003721).
                Categories
                Research and Theory

                Health & Social care
                complex healthcare needs,long-term tracheostomy,mechanical ventilation,integrated care,care coordination,healthcare concepts,scoping review

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