[Quality of Care for People with Home Mechanical Ventilation in Germany: A Scoping Review].
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ABSTRACT:
SUBMITTER: Klingshirn H
PROVIDER: S-EPMC7518336 | biostudies-literature | 2020 Sep
REPOSITORIES: biostudies-literature
Publications
[Quality of Care for People with Home Mechanical Ventilation in Germany: A Scoping Review].
Klingshirn Hanna H Gerken Laura L Heuschmann Peter P Haas Kirsten K Schutzmeier Martha M Brandstetter Lilly L Stangl Stephanie S Wurmb Thomas T Kippnich Maximilian M Reuschenbach Bernd B
Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) 20200710 8-09
<h4>Background</h4>Outpatient intensive care for people with long-term mechanical ventilation is a rapidly growing area with a wide range of care demands. The aim of this Scoping Review is to present the current state of research on the quality of care for people with home mechanical ventilation in Germany and to identify research gaps.<h4>Methods</h4>Based on predefined inclusion criteria, 4 databases were searched for publications dealing with the care of people with home ventilation in German ...[more]
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Project description:BackgroundThe 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).MethodsSemi-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.ResultsOverall, 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.ConclusionThis 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.
| S-EPMC8341833 | biostudies-literature
Project description:There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross-sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi-component tailored interventions and the influence of the care-giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care-giving dyad influences nutritional care.
| S-EPMC6849562 | biostudies-literature
Project description:BackgroundAssistive technologies for people with dementia and their relatives have the potential to ensure, improve, and facilitate home care and thereby enhance the health of the people caring or being cared for. The number and diversity of technologies and research have continuously increased over the past few decades. As a result, the research field has become complex.ObjectiveThe goal of this scoping review was to provide an overview of the research on technology-assisted home care for people with dementia and their relatives in order to guide further research and technology development.MethodsA scoping review was conducted following a published framework and by searching 4 databases (MEDLINE, CINAHL, PsycInfo, and CENTRAL) for studies published between 2013 and 2018. We included qualitative and quantitative studies in English or German focusing on technologies that support people with dementia or their informal carers in the home care setting. Studies that targeted exclusively people with mild cognitive impairment, delirium, or health professionals were excluded as well as studies that solely consisted of assessments without implication for the people with dementia or their relatives and prototype developments. We mapped the research field regarding study design, study aim, setting, sample size, technology type, and technology aim, and we report relative and absolute frequencies.ResultsFrom an initial 5328 records, we included 175 studies. We identified a variety of technology types including computers, telephones, smartphones, televisions, gaming consoles, monitoring devices, ambient assisted living, and robots. Assistive technologies were most commonly used by people with dementia (77/175, 44.0%), followed by relatives (68/175, 38.9%), and both target groups (30/175, 17.1%). Their most frequent goals were to enable or improve care, provide therapy, or positively influence symptoms of people with dementia (eg, disorientation). The greatest proportions of studies were case studies and case series (72/175, 41.1%) and randomized controlled trials (44/175, 25.1%). The majority of studies reported small sample sizes of between 1 and 50 participants (122/175, 69.7%). Furthermore, most of the studies analyzed the effectiveness (85/233, 36.5%) of the technology, while others targeted feasibility or usability or were explorative.ConclusionsThis review demonstrated the variety of technologies that support people with dementia and their relatives in the home care setting. Whereas this diversity provides the opportunity for needs-oriented technical solutions that fit individual care arrangements, it complicates the choice of the right technology. Therefore, research on the users' informational needs is required. Moreover, there is a need for larger studies on the technologies' effectiveness that could contribute to a higher acceptance and thus to a transition of technologies from research into the daily lives of people with dementia and their relatives.
| S-EPMC7857954 | biostudies-literature
Project description:PurposeThis study aimed to examine how young people living with Home Mechanical Ventilation experience the transition from childhood to young adulthood in relation to everyday life, perceived health and transition into adult professional healthcare.MethodsNine young adults (three females and six males aged 18-31) were interviewed, and data was primary analysed using phenomenological hermeneutics. In the actual study, data was reworked using secondary analysis as described by Beck. Two interviewees were ventilated invasively and six non-invasively, and one was treated with continuous positive airway pressure (CPAP).ResultsThe results are presented in two main categories. First; moving towards adulthood; and second, To handle changes in health and healthcare contacts. The study highlights the importance of ongoing social relations and being part of a socializing and physically active community. The transfer from paediatric to adult healthcare was solid and worked out well but was a process in which the participants struggled to find their own voice.ConclusionsThe transition into adulthood is a sensitive and challenging time for young people with HMV, but stable, close relationships and a well-organized transfer can enable this group to feel safe and able to find and use their own voice.
| S-EPMC11376296 | biostudies-literature
Project description:Background. The prevalence of patients supported with home mechanical ventilation (HMV) for chronic respiratory failure has increased. However, the clinical outcomes associated with HMV are largely unknown. Methods. We performed a systematic review of studies evaluating patients receiving HMV for indications other than obstructive lung disease, reporting at least one clinically relevant outcome including health-related quality of life (HRQL) measured by validated tools; hospitalization requirements; caregiver burden; and health service utilization. We searched MEDLINE, EMBASE, CINAHL, the Cochrane library, clinical trial registries, proceedings from selected scientific meetings, and bibliographies of retrieved citations. Results. We included 1 randomized control trial (RCT) and 25 observational studies of mixed methodological quality involving 4425 patients; neuromuscular disorders (NMD) (n = 1687); restrictive thoracic diseases (RTD) (n = 481); obesity hypoventilation syndrome (OHS) (n = 293); and others (n = 748). HRQL was generally described as good for HMV users. Mental rather than physical HRQL domains were rated higher, particularly where physical assessment was limited. Hospitalization rates and days in hospital appear to decrease with implementation of HMV. Caregiver burden associated with HMV was generally high; however, it is poorly described. Conclusion. HRQL and need for hospitalization may improve after establishment of HMV. These inferences are based on relatively few studies of marked heterogeneity and variable quality.
| S-EPMC4904519 | biostudies-literature
Project description:BackgroundIt has been shown that home mechanical ventilation improves quality of life, but it has not been widely studied which particular patient groups benefit the most from starting this type of therapy. The purpose of this prospective observational study was to evaluate quality of life change patterns 6 months after initiation of home mechanical ventilation in patients suffering from chronic respiratory failure using patient reported outcomes.MethodsWe enrolled 74 chronic respiratory failure patients starting invasive or noninvasive home mechanical ventilation through the Semmelweis University Home Mechanical Ventilation Program. Quality of life was evaluated at baseline and at 6 months after initiation of home mechanical ventilation using the Severe Respiratory Insufficiency Questionnaire.ResultsOverall quality of life showed 10.5% improvement 6 months after initiation of home mechanical ventilation (p < 0.001). The greatest improvement was observed in Respiratory complaint (20.4%, p = 0.015), Sleep and attendant symptoms (19.3%, p < 0.001), and Anxiety related subscales (14.4%, p < 0.001). Interface (invasive versus noninvasive ventilation) was not associated with improvement in quality of life (p = 0.660). Severely impaired patients showed the greatest improvement (CC = -0.328, p < 0.001). Initial diagnosis contributed to the observed change (p = 0.025), with chronic obstructive pulmonary disease and obesity hypoventilation syndrome patients showing the greatest improvement, while amyotrophic lateral sclerosis patients showed no improvement in quality of life. We found that patients who were started on long term ventilation in an acute setting, required oxygen supplementation and had low baseline quality of life, showed the most improvement during the six-month study period.ConclusionsOur study highlights the profound effect of home mechanical ventilation on quality of life in chronic respiratory failure patients that is indifferent of ventilation interface but is dependent on initial diagnosis and some baseline characteristics, like acute initiation, oxygen supplementation need and baseline quality of life.Trial registrationThis study was approved by and registered at the ethics committee of Semmelweis University (SE TUKEB 251/2017; 20th of December, 2017).
| S-EPMC7433042 | biostudies-literature
Project description:Home mechanical ventilation (HMV) is a treatment for chronic respiratory failure that has shown clinical and cost effectiveness in patients with underlying COPD, obesity-related respiratory failure and neuromuscular disease (NMD). By treating chronic respiratory failure with adequate adherence to HMV, improvement in patient-reported outcomes including health-related quality of life (HRQoL) have been evaluated using general and disease-specific quantitative, semi-qualitative and qualitative methods. However, the treatment response in terms of trajectory of change in HRQoL is not uniform across the restrictive and obstructive disease groups. In this review, the effect of HMV on HRQoL across the domains of symptom perception, physical wellbeing, mental wellbeing, anxiety, depression, self-efficacy and sleep quality in stable and post-acute COPD, rapidly progressive NMD (such as amyotrophic lateral sclerosis), inherited NMD (including Duchenne muscular dystrophy) and obesity-related respiratory failure will be discussed.
| S-EPMC10155047 | biostudies-literature
Project description:BackgroundThe number of patients depending on home mechanical ventilation (HMV) has increased substantially in Germany in recent years. These patients receive long-term care in different nursing facilities (nursing home, shared living community, private home). However, there are limited data available on the quality of care of HMV patients. The aim of the OVER-BEAS project was to identify quality indicators (QIs) of HMV care using an evidence-based approach.MethodsA multidisciplinary board consisting of professionals and experts of HMV provision compiled a set of QIs between March and September 2019. In a structured, transparent process a set of QIs covering structures, processes and outcome of HMV patient's care were proposed and evaluated based on the best available evidence. QIs were defined as relevant, reliable and valid measurements of the quality of HMV care and furthermore to be comprehensive and applicable in practice.ResultsThe experts proposed 40 QIs and consented a final set of 26 QIs. Based on the final set, questionnaires to document the QIs were developed: (1) to assess the quality and describe the structure of the nursing facility; and (2) to gather information on patient-related processes and outcomes. The feasibility of the questionnaires was tested in 5 nursing facilities treating HMV patients. The remarks from the nursing specialists were categorised in three groups: (1) term missing accuracy, (2) problem of understanding, and (3) not documented or documented elsewhere. Mean documentation time by the nursing specialists for one patient was 15 min. Based on this feedback, the questionnaires were finalised.ConclusionsWe proposed a set of QIs relating to long-term HMV care and developed two questionnaires to collect this information. In a pilot study, we found the set of questionnaires to be feasible in assessing the quality of HMV care according to current evidence. The development of standardised evidence-based QIs to evaluate HMV care is a step towards implementing a standardised quality assurance program to document the quality of care of HMV patients.
| S-EPMC10829274 | biostudies-literature
Project description:BACKGROUND:Many older people live at home, often with complex and chronic health and social care needs. Integrated care programs are increasingly being implemented as a way to better address these needs. To support older people living at home, it is also essential to maintain their safety. Integrated care programs have the potential to address a wide range of risks and problems that could undermine older people's ability to live independently at home. The aim of this scoping review is to provide insight into how integrated care programs address safety risks faced by older people living at home - an area that is rather underexplored. METHODS:Safety was conceptualised as preventing or reducing the risk of problems, associated with individual functioning and behaviour, social and physical environments, and health and social care management, which could undermine older people's ability to live independently at home. For this scoping review a systematic literature search was performed to identify papers describing integrated care programs where at least one intervention component addressed safety risks. Data were extracted on the programs' characteristics, safety risks addressed, and the activities and interventions used to address them. RESULTS:None of the 11 programs included in this review explicitly mentioned safety in their goals. Nevertheless, following the principles of our conceptual framework, the programs appeared to address risks in multiple domains. Most attention was paid to risks related to older people's functioning, behaviour, and the health and social care they receive. Risks related to people's physical and social environments received less attention. CONCLUSION:Even though prevention of safety risks is not an explicit goal of integrated care programs, the programs address a wide range of risks on multiple domains. The need to address social and environmental risks is becoming increasingly important given the growing number of people receiving care and support at home. Prioritising a multidimensional approach to safety in integrated care programs could enhance the ability of health and social care systems to support older people to live safely at home.
| S-EPMC7048120 | biostudies-literature
Project description:In many integrated care programs, a comprehensive geriatric assessment (CGA) is conducted to identify older people's problems and care needs. Different ways for conducting a CGA are in place. However, it is still unclear which CGA instruments and procedures for conducting them are used in integrated care programs, and what distinguishes them from each other. Furthermore, it is yet unknown how and to what extent CGAs, as a component of integrated care programs, actually reflect the main principles of integrated care, being comprehensiveness, multidisciplinarity and person-centredness. Therefore, the objectives of this study were to: (a) describe and compare different CGA instruments and procedures conducted within integrated care programs for older people living at home, and (b) describe how the principles of integrated care were applied in these CGAs. A scoping review of the scientific literature on CGAs in the context of integrated care was conducted for the period 2006-2018. Data were extracted on main characteristics of the identified CGA instruments and procedures, and on how principles of integrated care were applied in these CGAs. Twenty-seven integrated care programs were included in this study, of which most were implemented in the Netherlands and the United States. Twenty-one different CGAs were identified, of which the EASYcare instrument, RAI-HC/RAI-CHA and GRACE tool were used in multiple programs. The majority of CGAs seemed to reflect comprehensiveness, multidisciplinarity and person-centredness, although the way and extent to which principles of integrated care were incorporated differed between the CGAs. This study highlights the high variability of CGA instruments and procedures used in integrated care programs. This overview of available CGAs and their characteristics may promote (inter-)national exchange of CGAs, which could enable researchers and professionals in choosing from the wide range of existing CGAs, thereby preventing them from unnecessarily reinventing the wheel.
| S-EPMC6852049 | biostudies-literature