Indigenous experiences and underutilisation of disability support services in Australia: a qualitative meta-synthesis.

Purpose: Aboriginal and Torres Strait Islander People with a disability continue to experience barriers to service engagement such as mistrust of government services, lack of culturally appropriate support, marginalisation and disempowerment. This meta-synthesis reviews current literature regarding these experiences to explain why services are underutilised.Methods: The meta-synthesis was conducted using a meta-ethnographic approach to synthesise existing studies into new interpretive knowledge. The approach was supported by a search using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).Results: Ten original research papers utilising a qualitative methodology were extracted. Synthesis of the articles revealed four concepts that were developed into a conceptual model. These include:1) History Matters; 2) Cultural Understanding of Disability Care; 3) Limitations to Current Service Provision; and 4) Delivery of Effective Services.Conclusions: Disability services do not adequately consider the cultural needs of Aboriginal and Torres Strait Islander People or communicate in a culturally appropriate manner. There are expectations that Aboriginal and Torres Strait Islander People acknowledge their disability in alignment with western definitions of disability in order to access services. More work is needed to align disability services with culturally appropriate support to provide better health outcomes.Implications for RehabilitationAboriginal and Torres Strait Islander people with a disability continue to experience barriers to service engagement which must be addressed.An essential gap that must be filled in providing disability services to Aboriginal and Torres Strait Islander people is the acknowledgment of culture as a resolute influence on all client interactions with providers.A cultural model of disability may better align with the experiences of Aboriginal and Torres Strait Islander people than current medical and social models used in healthcare.Disability services need to align better with culturally appropriate support to provide better health outcomes for Aboriginal and Torres Strait Islander people.

Patient-based evidence: its role in decision making on end-of-life, orphan, and ultra-orphan medicines.

OBJECTIVES: The Scottish Medicines Consortium (SMC) conducts early health technology assessment (HTA) of new medicines on behalf of NHSScotland. Assessment of end-of-life (EoL), orphan, and ultra-orphan medicines includes a process to gather evidence from patients and carers during Patient and Clinician Engagement (PACE) meetings. The output of PACE meetings is a consensus statement describing the medicine's added value from the perspective of patients/carers and clinicians. The PACE statement is used by SMC committee members in decision making. This study compared how PACE participants and SMC committee members rate the importance of information in PACE statements for these medicines. METHODS: A survey was undertaken of patient group (PG) representatives and clinicians who participated in PACE meetings, and SMC committee members. RESULTS: PACE participants who responded (26 PG representatives and 14 clinicians) rated health benefits and ability to take part in normal life as important/very important. Convenience of administration and treatment choice received the lowest rating. Hope for the future received the most diverse response. PACE participants generally rated the importance of quality of life themes higher than committee members (n = 20) but the rank order was similar. Differences between the proportion of PACE participants and committee members who rated themes as important/very important were greatest for treatment choice and hope for the future. CONCLUSIONS: In general, PACE themes and subthemes that were rated highly by PACE participants were also considered important by SMC committee members, indicating that information captured during PACE meetings is relevant when making decisions on EoL, orphan, and ultra-orphan medicines.

Adaptive Pathways: Possible Next Steps for Payers in Preparation for Their Potential Implementation.

Medicines receiving a conditional marketing authorization through Medicines Adaptive Pathways to Patients (MAPPs) will be a challenge for payers. The "introduction" of MAPPs is already seen by the European Medicines Agency (EMA) as a fait accompli, with payers not consulted or involved. However, once medicines are approved through MAPPs, they will be evaluated for funding by payers through different activities. These include Health Technology Assessment (HTA) with often immature clinical data and high uncertainty, financial considerations, and negotiations through different types of agreements, which can require monitoring post launch. Payers have experience with new medicines approved through conditional approval, and the fact that MAPPs present additional challenges is a concern from their perspective. There may be some activities where payers can collaborate. The final decisions on whether to reimburse a new medicine via MAPPs will have more variation than for medicines licensed via conventional processes. This is due not only to increasing uncertainty associated with medicines authorized through MAPPs but also differences in legal frameworks between member states. Moreover, if the financial and side-effect burden from the period of conditional approval until granting full marketing authorization is shifted to the post-authorization phase, payers may have to bear such burdens. Collection of robust data during routine clinical use is challenging along with high prices for new medicines during data collection. This paper presents the concept of MAPPs and possible challenges. Concerns and potential ways forward are discussed and a number of recommendations are presented from the perspective of payers.

Payers' Views of the Changes Arising through the Possible Adoption of Adaptive Pathways.

Payers are a major stakeholder in any considerations and initiatives concerning adaptive licensing of new medicinal products, also referred to as Medicines Adaptive Pathways to patients (MAPPs). Firstly, the scope and necessity of MAPPs need further scrutiny, especially with regard to the definition of unmet need. Conditional approval pathways already exist for new medicines for seriously debilitating or life-threatening diseases and only a limited number of new medicines are innovative. Secondly, MAPPs will result in new medicines on the market with limited evidence about their effectiveness and safety. Additional data are to be collected after approval. Consequently, adaptive pathways may increase the risk of exposing patients to ineffective or unsafe medicines. We have already seen medicines approved conventionally that subsequently proved ineffective or unsafe amongst a wider, more co-morbid population as well as medicines that could have been considered for approval under MAPPs but subsequently proved ineffective or unsafe in Phase III trials and were never licensed. Thirdly, MAPPs also put high demands on payers. Routine collection of patient level data is difficult with high transaction costs. It is not clear who will fund these. Other challenges for payers include shifts in the risk governance framework, implications for evaluation and HTA, increased complexity of setting prices, difficulty with ensuring equity in the allocation of resources, definition of responsibility and liability and implementation of stratified use. Exit strategies also need to be agreed in advance, including price reductions, rebates, or reimbursement withdrawals when price premiums are not justified. These issues and concerns will be discussed in detail including potential ways forward.

Introduction and Utilization of High Priced HCV Medicines across Europe; Implications for the Future.

BACKGROUND: Infection with the Hepatitis C Virus (HCV) is a widespread transmittable disease with a diagnosed prevalence of 2.0%. Fortunately, it is now curable in most patients. Sales of medicines to treat HCV infection grew 2.7% per year between 2004 and 2011, enhanced by the launch of the protease inhibitors (PIs) boceprevir (BCV) and telaprevir (TVR) in addition to ribavirin and pegylated interferon (pegIFN). Costs will continue to rise with new treatments including sofosbuvir, which now include interferon free regimens. OBJECTIVE: Assess the uptake of BCV and TVR across Europe from a health authority perspective to offer future guidance on dealing with new high cost medicines. METHODS: Cross-sectional descriptive study of medicines to treat HCV (pegIFN, ribavirin, BCV and TVR) among European countries from 2008 to 2013. Utilization measured in defined daily doses (DDDs)/1000 patients/quarter (DIQs) and expenditure in Euros/DDD. Health authority activities to influence treatments categorized using the 4E methodology (Education, Engineering, Economics and Enforcement). RESULTS: Similar uptake of BCV and TVR among European countries and regions, ranging from 0.5 DIQ in Denmark, Netherlands and Slovenia to 1.5 DIQ in Tayside and Catalonia in 2013. However, different utilization of the new PIs vs. ribavirin indicates differences in dual vs. triple therapy, which is down to factors including physician preference and genotypes. Reimbursed prices for BCV and TVR were comparable across countries. CONCLUSION: There was reasonable consistency in the utilization of BCV and TVR among European countries in comparison with other high priced medicines. This may reflect the social demand to limit the transmission of HCV. However, the situation is changing with new curative medicines for HCV genotype 1 (GT1) with potentially an appreciable budget impact. These concerns have resulted in different prices across countries, with their impact on budgets and patient outcomes monitored in the future to provide additional guidance.

Inhaled ozone (O3)-induces changes in serum metabolomic and liver transcriptomic profiles in rats.

Air pollution has been linked to increased incidence of diabetes. Recently, we showed that ozone (O3) induces glucose intolerance, and increases serum leptin and epinephrine in Brown Norway rats. In this study, we hypothesized that O3 exposure will cause systemic changes in metabolic homeostasis and that serum metabolomic and liver transcriptomic profiling will provide mechanistic insights. In the first experiment, male Wistar Kyoto (WKY) rats were exposed to filtered air (FA) or O3 at 0.25, 0.50, or 1.0ppm, 6h/day for two days to establish concentration-related effects on glucose tolerance and lung injury. In a second experiment, rats were exposed to FA or 1.0ppm O3, 6h/day for either one or two consecutive days, and systemic metabolic responses were determined immediately after or 18h post-exposure. O3 increased serum glucose and leptin on day 1. Glucose intolerance persisted through two days of exposure but reversed 18h-post second exposure. O3 increased circulating metabolites of glycolysis, long-chain free fatty acids, branched-chain amino acids and cholesterol, while 1,5-anhydroglucitol, bile acids and metabolites of TCA cycle were decreased, indicating impaired glycemic control, proteolysis and lipolysis. Liver gene expression increased for markers of glycolysis, TCA cycle and gluconeogenesis, and decreased for markers of steroid and fat biosynthesis. Genes involved in apoptosis and mitochondrial function were also impacted by O3. In conclusion, short-term O3 exposure induces global metabolic derangement involving glucose, lipid, and amino acid metabolism, typical of a stress-response. It remains to be examined if these alterations contribute to insulin resistance upon chronic exposure.

Assessing patient awareness of proper hand hygiene.

BACKGROUND: The authors hypothesized that patients may not understand the forms of effective hand hygiene employed in the hospital environment. LITERATURE REVIEW: Multiple studies demonstrate the importance of hand hygiene in reducing healthcare-associated infections (HAIs). Extensive research about how to improve compliance has been conducted. METHODOLOGY: Patients' perceptions of proper hand hygiene were evaluated when caregivers used soap and water, waterless hand cleaner, or a combination of these. RESULTS: No significant differences were observed, but many patients reported they did not notice whether their providers cleaned their hands. DISCUSSION: Educating patients and their caregivers about the protection afforded by proper, consistent hand hygiene practices is important. IMPLICATIONS FOR NURSING PRACTICE: Engaging patients to monitor healthcare workers may increase compliance, reduce the spread of infection, and lead to better overall patient outcomes. IMPLICATIONS FOR RESEARCH: This study revealed a need to investigate the effects of patient education on patient perceptions of hand hygiene. CONCLUSION: Results of this study appear to indicate a need to focus on patient education and the differences between soap and water versus alcohol-based hand sanitizers as part of proper hand hygiene. Researchers could be asking: "Why have patients not been engaged as members of the healthcare team who have the most to lose?"

Personalizing health care: feasibility and future implications.

Considerable variety in how patients respond to treatments, driven by differences in their geno- and/ or phenotypes, calls for a more tailored approach. This is already happening, and will accelerate with developments in personalized medicine. However, its promise has not always translated into improvements in patient care due to the complexities involved. There are also concerns that advice for tests has been reversed, current tests can be costly, there is fragmentation of funding of care, and companies may seek high prices for new targeted drugs. There is a need to integrate current knowledge from a payer's perspective to provide future guidance. Multiple findings including general considerations; influence of pharmacogenomics on response and toxicity of drug therapies; value of biomarker tests; limitations and costs of tests; and potentially high acquisition costs of new targeted therapies help to give guidance on potential ways forward for all stakeholder groups. Overall, personalized medicine has the potential to revolutionize care. However, current challenges and concerns need to be addressed to enhance its uptake and funding to benefit patients.

Dabigatran - a case history demonstrating the need for comprehensive approaches to optimize the use of new drugs.

BACKGROUND: There are potential conflicts between authorities and companies to fund new premium priced drugs especially where there are safety and/or budget concerns. Dabigatran, a new oral anticoagulant for the prevention of stroke in patients with non-valvular atrial fibrillation (AF), exemplifies this issue. Whilst new effective treatments are needed, there are issues in the elderly with dabigatran due to variable drug concentrations, no known antidote and dependence on renal elimination. Published studies have shown dabigatran to be cost-effective but there are budget concerns given the prevalence of AF. There are also issues with potentially re-designing anticoagulant services. This has resulted in activities across countries to better manage its use. OBJECTIVE: To (i) review authority activities in over 30 countries and regions, (ii) use the findings to develop new models to better manage the entry of new drugs, and (iii) review the implications for all major stakeholder groups. METHODOLOGY: Descriptive review and appraisal of activities regarding dabigatran and the development of guidance for groups through an iterative process. RESULTS: There has been a plethora of activities among authorities to manage the prescribing of dabigatran including extensive pre-launch activities, risk sharing arrangements, prescribing restrictions, and monitoring of prescribing post-launch. Reimbursement has been denied in some countries due to concerns with its budget impact and/or excessive bleeding. Development of a new model and future guidance is proposed to better manage the entry of new drugs, centering on three pillars of pre-, peri-, and post-launch activities. CONCLUSION: Models for introducing new drugs are essential to optimize their prescribing especially where there are concerns. Without such models, new drugs may be withdrawn prematurely and/or struggle for funding.

"I want to find my life again": dementia and grief.

This first-person, qualitative narrative follows the author's encounters with Maureen (M), a resident in a long-term care (LTC) facility whose husband has recently died. The author (C), a Spiritual Care Professional, explores how shifts in identity provoked by dementia impact Maureen's grief. The author focuses on intersections between identity and dimensions of care, as clients with dementia lose the self due to the effects of the disease processes and/or by grief. This article challenges Spiritual Care Professionals to think beyond the neurologically dissipative symptoms of dementia towards reconstructing clients' identities using new feelings and conceptualizations and drawing from memory-based narratives where possible. The author calls for all paid caregivers and Spiritual Care Professionals in particular to consider creatively rethinking their actions and values using the social constructivist model when interacting with clients. Caregivers can encourage the reconstruction of self and identity among clients with dementia by recognizing that clients still feel all emotions even if they are no longer able to express these emotions through words.

Clinical decision-making: midwifery students' recognition of, and response to, post partum haemorrhage in the simulation environment.

BACKGROUND: This paper reports the findings of a study of how midwifery students responded to a simulated post partum haemorrhage (PPH). Internationally, 25% of maternal deaths are attributed to severe haemorrhage. Although this figure is far higher in developing countries, the risk to maternal wellbeing and child health problem means that all midwives need to remain vigilant and respond appropriately to early signs of maternal deterioration. METHODS: Simulation using a patient actress enabled the research team to investigate the way in which 35 midwifery students made decisions in a dynamic high fidelity PPH scenario. The actress wore a birthing suit that simulated blood loss and a flaccid uterus on palpation. The scenario provided low levels of uncertainty and high levels of relevant information. The student's response to the scenario was videoed. Immediately after, they were invited to review the video, reflect on their performance and give a commentary as to what affected their decisions. The data were analysed using Dimensional Analysis. RESULTS: The students' clinical management of the situation varied considerably. Students struggled to prioritize their actions where more than one response was required to a clinical cue and did not necessarily use mnemonics as heuristic devices to guide their actions. Driven by a response to single cues they also showed a reluctance to formulate a diagnosis based on inductive and deductive reasoning cycles. This meant they did not necessarily introduce new hypothetical ideas against which they might refute or confirm a diagnosis and thereby eliminate fixation error. CONCLUSIONS: The students response demonstrated that a number of clinical skills require updating on a regular basis including: fundal massage technique, the use of emergency standing order drugs, communication and delegation of tasks to others in an emergency and working independently until help arrives. Heuristic devices helped the students to evaluate their interventions to illuminate what else could be done whilst they awaited the emergency team. They did not necessarily serve to prompt the students' or help them plan care prospectively. The limitations of the study are critically explored along with the pedagogic implications for initial training and continuing professional development.

Managing women with acute physiological deterioration: student midwives performance in a simulated setting.

OBJECTIVE: Midwives' ability to manage maternal deterioration and 'failure to rescue' are of concern with questions over knowledge, clinical skills and the implications for maternal morbidity and, mortality rates. In a simulated setting our objective was to assess student midwives' ability to assess, and manage maternal deterioration using measures of knowledge, situation awareness and skill, performance. METHODS: An exploratory quantitative analysis of student performance based upon performance, ratings derived from knowledge tests and observational ratings. During 2010 thirty-five student, midwives attended a simulation laboratory completing a knowledge questionnaire and two video, recorded simulated scenarios. Patient actresses wearing a 'birthing suit' simulated deteriorating, women with post-partum and ante-partum haemorrhage (PPH and APH). Situation awareness was, measured at the end of each scenario. Applicable descriptive and inferential statistical tests were, applied to the data. FINDINGS: The mean total knowledge score was 75% (range 46-91%) with low skill performance, means for both scenarios 54% (range 39-70%). There was no difference in performance between the scenarios, however performance of key observations decreased as the women deteriorated; with significant reductions in key vital signs such as blood pressure and blood loss measurements. Situation, awareness scores were also low (54%) with awareness decreasing significantly (t(32)=2.247, p=0.032), in the second and more difficult APH scenario. CONCLUSION: Whilst knowledge levels were generally good, skills were generally poor and decreased as the women deteriorated. Such failures to apply knowledge in emergency stressful situations may be resolved by repetitive high stakes and high fidelity simulation.

Navigating new technologies in negative pressure wound therapy.

Plastic surgeons and their support staff are tasked with proficient management of a wide variety of complex wounds. Since its introduction, negative pressure wound therapy (NPWT) has increasingly been used within the plastic surgery specialty to improve and simplify wound management. Increased usage of the therapy has prompted the development of a myriad of new NPWT systems. While an expanded product selection allows greater choice to maximize patient outcomes, sound decision-making also requires a clear understanding of the characteristics of various NPWT systems and applications. Wound-specific NPWT systems of varying size are available for low- to moderate-severity wounds, clean closed incisions, and acute abdominal wounds. Wound size and severity, amount of exudate, and patient mobility issues have become important considerations when choosing an NPWT device. The purpose of this article is to familiarize the reader with the latest sophistications in NPWT systems to guide decision making and usage.

Registered nurses as members of interprofessional primary health care teams in remote or isolated areas of Queensland: Collaboration, communication and partnerships in practice.

Nurses represent the largest occupational group of health care professionals in Australia. The ratio of nurses to population is relatively consistent, unlike other health care professional groups (including medical doctors and allied health staff) whose numbers decline as population density and distance from metropolitan areas increases. Nurses working in areas where other health care professionals are limited or absent have expanded scopes of practice with their work being more generalist than specialist. The role of nurses in remote and isolated areas of Queensland, Australia was the focus of a commissioned multi-case research project. Findings reported in this paper relate to the position of registered nurses as part of an interprofessional team. These findings indicated that, in some instances, local health care teams were limited to a single nurse and Indigenous health care worker/s, while in others the teams were more diverse. In all cases collegial support was available either locally or via telecommunication technology. Understanding the role of each team member, having useful strategies to enhance communication and work collaboratively were identified as essential criteria for "good practice".

Australian rural remote registered nurses' experiences of learning to provide antenatal services in general practice: a pilot study.

This article reports on a pilot vocational study programme for provision of antenatal services in the general practice environment. The concurrent evaluation study assessed practice nurses' experiences of undertaking the pilot programme, the level and applicability of the content, and the mode of delivery. General practitioners' understanding of the role of the nurse in providing antenatal services, and the actual and potential impact of this new role on models of service delivery and care were also investigated. Women receiving care from practice nurses within this new model of service delivery and care were also of interest in this study. Findings showed that the current role of the general practice nurse in caring for pregnant women is restricted to assisting the general practitioner to complete their assessment of clients. Organizing clinical placement with a midwife was a major barrier to completing the pilot programme.

Issues of active ageing: perceptions of older people with lifelong intellectual disability.

OBJECTIVE(S): The study aimed to investigate the lived experiences of older people with lifelong intellectual disability and to explore the meaning of active ageing for this group. METHODS: Data were collected using semistructured interviews with 16 service users (people with lifelong intellectual disability aged 50+ years); 16 service providers and 16 key informal network members from regional/rural and urban areas in Queensland and Victoria. RESULTS: Themes identified: being empowered, being actively involved, having a sense of security, maintaining skills and learning, having congenial living arrangements, having optimal health and fitness, being safe and feeling safe and having satisfying relationships and support. CONCLUSIONS: Service users wanted to 'keep on keeping-on' in areas of life that gave them pleasure rather than discontinuing them because of age. They wanted more control over issues affecting their lives and to be given meaningful roles. Mental stimulation, companionship, reliable support and safety were valued by this group.