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.
Aim Long-term invasively ventilated patients exhibit exceptional and resource-intensive healthcare needs. However, major knowledge gaps in Germany complicate appropriate approaches to best address these demands. This paper evaluates available information on the patient group and their healthcare needs from German data sources and derives implications for healthcare planning and regulation by national/federal self-governing bodies, political decision-makers, and specialized providers. Methods Based on the concept of needs, we addressed the normative dimension typically characterized by epidemiological data. Based on existing German health system data resources, an explorative approach was utilized to identify and characterize available databases providing information on the patient group and/or their healthcare. Results To date, no available database provides information on the healthcare needs of this patient group. As of the reporting year 2017, the diagnosis-related groups (DRG) statistics will provide hospital-specific data on home invasive ventilation interventions, but the data do not provide information on long-term care. Claims data may be a promising source for cross-sectoral evaluation of healthcare needs but feature methodological challenges. These results call for efforts to address limited data eligibility, adopt a broader understanding of healthcare needs, and identify actions needed to evidence informed and needsoriented healthcare. Conclusion Future approaches on needs-oriented specialized healthcare should close the existing knowledge gap based on reliable data. In addition to normative information, they should consider subjective dimensions on a life course perspective and quantitative and qualitative service performance characteristics across multiple sectors and professions.
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