Background The rapid increase in the use of home mechanical ventilation (HMV) for people with chronic respiratory failure poses extreme challenges for the healthcare system. People on HMV have complex care needs and require support from an interprofessional team. In Germany, HMV is criticised for inadequate quality standards, particularly in outpatient intensive care practice. The objective of this study was to describe the quality of care for people on outpatient HMV in Germany, Bavaria and provide recommendations for improvement from the perspective of healthcare professionals (HCPs). Methods Semi-structured qualitative telephone interviews with HCPs (i.e., nurses, equipment providers, therapists, and physicians) were analysed using the framework method. The quality framework of Health Improvement Scotland (HIS), which aims to improve the quality of person-centred care, was used to build a deductive analysis matrix. The framework includes the three key areas: (1) Outcomes and impact, (2) Service delivery, and (3) Vision and leadership. The domains (meta-codes) and quality indicators (sub-codes) of the quality framework were used for deductive coding. Results Overall, 87 HCPs (51 female, mean age of 44.3 years, mean professional experience in HMV of 9.4 years) were interviewed (mean duration of 31 min). There was a complex interaction between the existing health care system (Outcomes and impact, 955 meaning units), the delivery of outpatient intensive care (Service delivery, 939 meaning units), and improvement-focused leadership (Vision and leadership, 70 meaning units) that influenced the quality of care for people on HMV. The main barriers were an acceleration in transition management, a neglect of weaning potential, a shortage of qualified professionals and missing quality criteria. The central recommendations for promoting person-centred care were training and supervision of staff and an inspiring leadership. An integrated care structure supporting medical home visits and outpatient rehabilitation should be developed. Conclusion This study describes a heterogeneous and partly deficient care situation for people on HMV, but demonstrates that high quality care is possible if person-centred care is successfully implemented in all areas of service provision. The recommendations of this study could inform the development of a person-centred integrated care structure for people on HMV.

Zusammenfassung Hintergrund Die außerklinische Intensivversorgung von Menschen mit Langzeitbeatmung ist ein stark anwachsender Bereich mit vielseitigen Versorgungsbedarfen. Ziel dieses Scoping Reviews ist es, den aktuellen Forschungsstand zur Qualität der Versorgung beatmeter Menschen in der außerstationären Intensivpflege in Deutschland darzustellen und Forschungslücken aufzudecken. Methode Anhand definierter Einschlusskriterien wurden 4 Datenbanken nach Publikationen zur Versorgung von außerklinisch beatmeten Menschen in Deutschland durchsucht. Datenextraktion und Synthese erfolgten nach der Methode der „data driven thematic analysis“. Eine Differenzierung zwischen Forschung und Expertenmeinung fand statt. Ergebnisse Die Suche ergab 493 Treffer, von denen insgesamt 68 Publikationen eingeschlossen wurden, darunter 2 Leitlinien (3%), 45 (66%) Forschungsarbeiten und 21 (31%) Expertenmeinungen. Inhaltlich konnten folgende Themenfelder identifiziert werden: Organisation und Steuerung der Beatmung (n=43; 63%), pflegerische (n=23; 34%), medizinische (n=39; 57%), therapeutische (n=7; 10%) und Hilfsmittelversorgung (n=24; 35%), sowie die Sicht beatmeter Personen und deren Angehörigen (n=33; 49%) und weitere Themen (n=13; 19%). Schlussfolgerung Obwohl der Qualitätsdiskurs zur Versorgung beatmeter Personen in der außerklinischen Intensivpflege breit geführt wird, fehlen Studien zur Bedarfsgerechtigkeit von Versorgungsleistungen, zu Selbstbestimmung und Teilhabe in Abhängigkeit der Wohnform oder zur Rolle einzelner ‚Health Professionals‘ im interprofessionellen Team.

Background People on home mechanical ventilation (HMV) belong to a heterogeneous population with complex care needs. In Germany, outpatient intensive care is provided in people's private home (PH) or in shared living communities (SLC). Increasing patient numbers have led to criticism of the quality of care in recent years. Since quality deficits from the perspective of those affected are largely unclear, the following research question emerged: How do interviews with ventilated individuals and family caregivers explain any differences or similarities in the quality of care between PH and SLC? Methods This study used a mixed-methods convergent parallel design, where quantitative and qualitative components were separately collected and analysed. The quantitative component (structured interviews and online survey) included ventilation characteristics, health-related resource use, health-related quality of life (HRQL) measured with the Severe Respiratory Insufficiency Questionnaire (SRI; range 0-100; higher scores indicated higher HRQL) and the Burden Scale of the Family Caregivers short version (BSFC-s; range 0-30; higher scores indicated higher burden). The qualitative component (semi-structured interviews) focused on people's experience of person-centred care. Data were merged using a weaving method and the Picker framework of Person-Centred Care. Results The quantitative component revealed that ventilated individuals living in PHs were on average 20 years younger than participants living in SLCs (n = 46; PH: 46.86 ±15.40 years vs. SLC: 65.07 ±11.78 years; p = .001). HRQL (n = 27; PH: 56.62 ±16.40 vs. SLC: 55.35 ±12.72; p > .999) and the burden of family caregivers (n = 16; PH: 13.20 ±10.18 vs. SLC: 12.64 ±8.55; p > .999) were not significantly different between living situation. The qualitative component revealed that person-centred care is possible in both care settings (ventilated individuals: n = 13; family caregivers: n = 18). Conclusion This study describes a care situation that is as heterogeneous as the population of people with HMV. HRQL and the burden of family caregivers are highly individual and, like person-centred care, independent of the living situation. Policy decisions that facilitate person-centred care need to recognise that quality of care is highly individual and starts with the free choice of the care setting.

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Background In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the diagnostic process. The ZSE-DUO study aims to assess the benefits of a combination of a physician focusing on somatic aspects with a mental health expert working side by side as a tandem in the diagnostic process.Study design This multi-center, prospective controlled study has a two-phase cohort design. Methods Two cohorts of 682 patients each are sequentially recruited from 11 university-based German Centers for Rare Diseases (CRD): the standard care cohort (control, somatic expertise only) and the innovative care cohort (experimental, combined somatic and mental health expertise). Individuals aged 12 years and older presenting with symptoms and signs which are not explained by current diagnoses will be included. Data will be collected prior to (T0) and at the first visit (T1) to the CRD’s outpatient clinic and 12 months thereafter (T2). Outcomes Primary outcome is the percentage of patients with one or more confirmed diagnoses covering the symptomatic spectrum presented. Sample size is calculated to detect a 10 percent increase from 30% in standard care to 40% in the innovative dual expert cohort. Secondary outcomes are a) time to diagnosis/diagnoses explaining the symptomatology; b) proportion of patients successfully referred from CRD to standard care; c) costs of diagnosis including incremental cost effectiveness ratios; d) predictive value of screening instruments administered at T0 to identify patients with mental disorders ; e) patients’ quality of life and evaluation of care; and f) physicians’ satisfaction with the innovative care approach. Conclusions This is the first multi-center study to investigate the effects of a mental health specialist working in tandem with a somatic expert physician in CRDs. If this innovative approach proves successful, it will be made available on a larger scale nationally and promoted internationally. In the best case, ZSE-DUO can significantly shorten the time to diagnosis for a suspected rare disease.