Towards sustainable healthcare system performance in the 21st century in high-income countries: A protocol for a systematic review of the grey literature

© © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. Introduction There is wide recognition that, if healthcare systems continue along current trajectories, they will become harder to sustain. Ageing populations, accelerating rates of chronic disease, increasing costs, inefficiencies, wasteful spending and low-value care pose significant challenges to healthcare system durability. Sustainable healthcare systems are important to patients, society, policy-makers, public and private funders, the healthcare workforce and researchers. To capture current thinking about improving healthcare system sustainability, we present a protocol for the systematic review of grey literature to capture the current state-of-knowledge and to compliment a review of peer-reviewed literature. Methods and analysis The proposed search strategy, based on the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines, includes Google Advanced Search, snowballing techniques and targeted hand searching of websites of lead organisations such as WHO, Organisation for Economic Cooperation and Development, governments, public policy institutes, universities and non-government organisations. Documents will be selected after reviewing document summaries. Included documents will undergo full-Text review. The following criteria will be used: grey literature document; English language; published January 2013-March 2018; relevant to the healthcare delivery system; the content has international or national scope in high-income countries. Documents will be assessed for quality, credibility and objectivity using validated checklists. Descriptive data elements will be extracted: identified sustainability threats, definitions of sustainability, attributes of sustainable healthcare systems, solutions for improvement and outcome measures of sustainability. Data will be analysed using novel text-mining methods to identify common concept themes and meanings. This will be triangulated with the more traditional analysis and concept theming by the researchers. Ethics and dissemination No primary data will be collected, therefore ethical approval will not be sought. The results will be disseminated in peer-reviewed literature, as conference presentations and as condensed summaries for policy-makers and health system partners. PROSPERO registration number CRD42018103076

Systematic review of 29 self-report instruments for assessing quality of life in older adults receiving aged care services

Background: Quality of life (QoL) outcomes are used to monitor quality of care for older adults accessing aged care services, yet it remains unclear which QoL instruments best meet older adults', providers' and policymakers' needs. This review aimed to (1) identify QoL instruments used in aged care and describe them in terms of QoL domains measured and logistical details; (2) summarise in which aged care settings the instruments have been used and (3) discuss factors to consider in deciding on the suitability of QoL instruments for use in aged care services. Design: Systematic review. Data sources: MEDLINE, EMBASE, PsycINFO, Cochrane Library and CINAHL from inception to 2021. Eligibility criteria: Instruments were included if they were designed for adults (>18 years), available in English, been applied in a peer-reviewed research study examining QoL outcomes in adults >65 years accessing aged care (including home/social care, residential/long-term care) and had reported psychometrics. Data extraction and synthesis: Two researchers independently reviewed the measures and extracted the data. Data synthesis was performed via narrative review of eligible instruments. Results: 292 articles reporting on 29 QoL instruments were included. Eight domains of QoL were addressed: physical health, mental health, emotional state, social connection, environment, autonomy and overall QoL. The period between 1990 and 2000 produced the greatest number of newly developed instruments. The EuroQoL-5 Dimensions (EQ-5D) and Short Form-series were used across multiple aged care contexts including home and residential care. More recent instruments (eg, ICEpop CAPability measure for Older people (ICECAP-O) and Adult Social Care Outcomes Toolkit (ASCOT)) tend to capture emotional sentiment towards personal circumstances and higher order care needs, in comparison with more established instruments (eg, EQ-5D) which are largely focused on health status. Conclusions: A comprehensive list of QoL instruments and their characteristics is provided to inform instrument choice for use in research or for care quality assurance in aged care settings, depending on needs and interests of users

Systems resilience in the implementation of a large-scale suicide prevention intervention: a qualitative study using a multilevel theoretical approach

Background Resilience, the capacity to adapt and respond to challenges and disturbances, is now considered fundamental to understanding how healthcare systems maintain required levels of performance across varying conditions. Limited research has examined healthcare resilience in the context of implementing healthcare improvement programs across multiple system levels, particularly within community-based mental health settings or systems. In this study, we explored resilient characteristics across varying system levels (individual, team, management) during the implementation of a large-scale community-based suicide prevention intervention. Methods Semi-structured interviews (n=53) were conducted with coordinating teams from the four intervention regions and the central implementation management team. Data were audio-recorded, transcribed, and imported into NVivo for analysis. A thematic analysis of eight transcripts involving thirteen key personnel was conducted using a deductive approach to identify characteristics of resilience across multiple system levels and an inductive approach to uncover both impediments to, and strategies that supported, resilient performance during the implementation of the suicide prevention intervention. Results Numerous impediments to resilient performance were identified (e.g., complexity of the intervention, and incompatible goals and priorities between system levels). Consistent with the adopted theoretical framework, indicators of resilient performance relating to anticipation, sensemaking, adaptation and tradeoffs were identified at multiple system levels. At each of the system levels, distinctive strategies were identified that promoted resilience. At the individual and team levels, several key strategies were used by the project coordinators to promote resilience, such as building relationships and networks and carefully prioritising available resources. At the management level, strategies included teambuilding, collaborative learning, building relationships with external stakeholders, monitoring progress and providing feedback. The results also suggested that resilience at one level can shape resilience at other levels in complex ways; most notably we identified that there can be a downside to resilience, with negative consequences including stress and burnout, among individuals enacting resilience. Conclusions The importance of considering resilience from a multilevel systems perspective, as well as implications for theory and future research, are discussed.publishedVersio

“Dealing with the Hospital has Become too Difficult for Us to Do Alone” – Developing an Integrated Care Program for Children with Medical Complexity (CMC)

Introduction: Children with medical complexity (CMC) require highly specialised care, often from multiple providers and over many years. This paper describes the first 18 months of development of the Kids Guided Personalised Services (GPS) Integrated Care Program (the Program). This Program aims to improve health care experience; communication and to streamline provision of care. Discussion: Key enablers across the Program were put in place and 5 individual project streams were used to implement change. An extensive formative evaluation process was undertaken to truly understand all perspectives in developing the Program. Conclusion/Key Lessons: This Program supports families who are caring for CMC by developing shared care models that bring together local health services with the tertiary hospitals. The methodology used has resulted in comprehensive system change and transformation; reduced presentations to the Emergency Department (ED), avoidable admissions and travel time. A challenge remains in meaningfully engaging primary health care providers

The supportive care needs of parents caring for a child with a rare disease : a scoping review

Background: Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs Framework (SCNF) as the structure for this review. Objective: The purpose of the current review was to identify the supportive care needs of parents with a child with a rare disease, irrespective of condition. Methods: We conducted a scoping study review comprising 29 studies (1990–2014) to identify and examine the research literature related to the supportive care needs of parents, and to compare these needs with the seven domains outlined in the SCNF. Results: Most common needs cited were social needs (72% of papers), followed by informational needs (65% of papers) and emotional needs (62% of papers), with the most common parental needs overall being information about their child's disease, emotional stress, guilt and uncertainty about their child's future health care needs, parents own caring responsibilities and the need for more general support. Conclusion: A paucity of studies exists that explore the supportive care needs of parents of a child with a rare disease. The SCNF only partially reflects the breadth and type of needs of these parents, and a preliminary revised framework has been suggested. Further research is required in this area, particularly empirical research to amend or confirm the suggested new framework

Comparing the use of, and considering the need for, lumbar puncture in children with influenza or other respiratory virus infections

Background The clinical presentation of influenza in infancy may be similar to serious bacterial infection and be investigated with invasive procedures like lumbar puncture (LP), despite very limited evidence that influenza occurs concomitantly with bacterial meningitis, perhaps because the diagnosis of influenza is very often not established when the decision to perform LP is being considered. Methods A retrospective medical record review was undertaken in all children presenting to the Children's Hospital at Westmead, Sydney, Australia, in one winter season with laboratory-confirmed influenza or other respiratory virus infections (ORVIs) but excluding respiratory syncytial virus, to compare the use of, and reflect on the need for, the performance of invasive diagnostic procedures, principally LP, but also blood culture, in influenza and non-influenza cases. We also determined the rate of concomitant bacterial meningitis or bacteraemia. Findings Of 294 children, 51% had laboratory-confirmed influenza and 49% had ORVIs such as parainfluenza viruses (34%) and adenoviruses (15%). Of those with influenza, 18% had a LP and 71% had a blood culture performed compared with 6·3% and 55·5% in the ORVI group (for both

Severe influenza cases in paediatric intensive care units in Germany during the pre-pandemic seasons 2005 to 2008

<p>Abstract</p> <p>Background</p> <p>Data on complications in children with seasonal influenza virus infection are limited. We initiated a nation-wide three-year surveillance of children who were admitted to a paediatric intensive care unit (PICU) with severe seasonal influenza.</p> <p>Methods</p> <p>From October 2005 to July 2008, active surveillance was performed using an established reporting system for rare diseases (ESPED) including all paediatric hospitals in Germany. Cases to be reported were hospitalized children < 17 years of age with laboratory-confirmed influenza treated in a PICU or dying in hospital.</p> <p>Results</p> <p>Twenty severe influenza-associated cases were reported from 14 PICUs during three pre-pandemic influenza seasons (2005-2008). The median age of the patients (12 males/8 females) was 7.5 years (range 0.1-15 years). None had received vaccination against influenza. In 14 (70%) patients, the infection had been caused by influenza A and in five (25%) by influenza B; in one child (5%) the influenza type was not reported. Patients spent a median of 19 (IQR 12-38) days in the hospital and a median of 11 days (IQR 6-18 days) in the PICU; 10 (50%) needed mechanical ventilation. Most frequent diagnoses were influenza-associated pneumonia (60%), bronchitis/bronchiolitis (30%), encephalitis/encephalopathy (25%), secondary bacterial pneumonia (25%), and ARDS (25%). Eleven (55%) children had chronic underlying medical conditions, including 8 (40%) with chronic pulmonary diseases. Two influenza A- associated deaths were reported: <it>i) </it>an 8-year old boy with pneumococcal encephalopathy following influenza infection died from cerebral edema, <it>ii) </it>a 14-year-old boy with asthma bronchiale, cardiac malformation and Addison's disease died from cardiac and respiratory failure. For nine (45%) patients, possibly permanent sequelae were reported (3 neurological, 3 pulmonary, 3 other sequelae).</p> <p>Conclusions</p> <p>Influenza-associated pneumonia and secondary bacterial infections are relevant complications of seasonal influenza in Germany. The incidence of severe influenza cases in PICUs was relatively low. This may be either due to the weak to moderate seasonal influenza activity during the years 2005 to 2008 or due to under-diagnosis of influenza by physicians. Fifty% of the observed severe cases might have been prevented by following the recommendations for vaccination of risk groups in Germany.</p

The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort.

PURPOSE: It has been argued that rare diseases should be recognized as a public health priority. However, there is a shortage of epidemiological data describing the true burden of rare diseases. This study investigated hospital service use to provide a better understanding of the collective health and economic impacts of rare diseases. METHODS: Novel methodology was developed using a carefully constructed set of diagnostic codes, a selection of rare disease cohorts from hospital administrative data, and advanced data-linkage technologies. Outcomes included health-service use and hospital admission costs. RESULTS: In 2010, cohort members who were alive represented approximately 2.0% of the Western Australian population. The cohort accounted for 4.6% of people discharged from hospital and 9.9% of hospital discharges, and it had a greater average length of stay than the general population. The total cost of hospital discharges for the cohort represented 10.5% of 2010 state inpatient hospital costs. CONCLUSIONS: This population-based cohort study provides strong new evidence of a marked disparity between the proportion of the population with rare diseases and their combined health-system costs. The methodology will inform future rare-disease studies, and the evidence will guide government strategies for managing the service needs of people living with rare diseases.Genet Med advance online publication 22 September 2016Genetics in Medicine (2016); doi:10.1038/gim.2016.143