Ageism in healthcare has received increased attention in recent years, but literature focusing on how it affects individuals living with rare diseases remains scant. The rare disease population already faces obstacles when navigating health systems, and ageism has the potential to exacerbate existing health inequities. We conducted a systematic review of peer-reviewed and gray literature on health inequities in rare disease populations, seeking to identify publications that reported primary or secondary data on the equitable or inequitable treatment of these populations, or that discussed related regulatory, moral, or philosophical issues. Our aims were to understand how health inequities in these populations arise, how they are justified from societal points of view, how they manifest themselves in laws and regulations, and what effects they have on health care access and health outcomes. We retrieved information from 63 publications, which we inductively synthesized into five categories: ethical discussions, societal preferences, regulations, access to care, and health outcomes. Integrating insights from these categories, we developed an Ethical Spectrum and Resource Allocation Framework, which explains the emergence of equity issues and how they are manifested in health systems. By providing a better understanding of the root causes of health inequities, particularly among older adults, the framework can inform health policymaking, improving access to care and health outcomes for rare disease patients.

Ageism in healthcare has received increased attention in recent years, but there appears to be scant literature focusing on how it affects individuals living with rare diseases. The rare disease population already faces obstacles when navigating health systems, and ageism has the potential to exacerbate existing health inequities. We conducted a systematic review of peer-reviewed and gray literature on health inequities in rare disease populations, seeking to identify publications that reported primary or secondary data on the equitable or inequitable treatment of these populations, or discussed related regulatory, moral, or philosophical issues. Our aims were to understand how health inequities in these populations arise, how they are justified from societal points of view, how they manifest themselves in laws and regulations, and what effects they have on health care access and health outcomes. We retrieved information from 63 publications, which we inductively synthesized into five categories: ethical discussions, societal preferences, regulations, access to care, and health outcomes. Integrating insights from these categories, we developed an Ethical Spectrum and Resource Allocation Framework, which explains the emergence of equity issues and how they are manifested in health systems. By providing a better understanding of the root causes of health inequities, particularly among older adults, the framework can inform health policymaking, improving access to care and health outcomes for rare disease patients.

Background The introduction of massive parallel sequencing has contributed to a decline in sequencing costs. In recent years, whole-exome sequencing (WES) and whole-genome sequencing (WGS) have been increasingly adopted for diagnostic purposes in individuals with suspected genetic diseases. However, a debate is still ongoing in the scientific community about the superiority of WGS over WES in terms of cost-effectiveness. The aim of this study is to assess whether WGS, for the pediatric population with suspected genetic disorders, is cost-effective with respect to WES and chromosomal microarray (CMA) by pooling incremental net benefits. Materials and methods Articles were retrieved from PubMed, Web of Science, Embase and Scopus from 2015 to 2021. The dominance ranking matrix (DRM) tool was adopted to provide a qualitative synthesis of all the included studies. Incremental net benefits (INBs) were estimated and meta-analysis was implemented to pool INBs across studies. Results The database search identified 1600 publications of which four articles were considered eligible for the meta-analysis. The pooled INB of WGS over WES was estimated at I$4073 (95% CI I$2426 – I$5720). The pooled INB of WGS over CMA amounted to I$6003 (95% CI I$2863 – I$9143). Conclusions WGS could be cost-effective in the diagnostic workup of affected infants and children. Further economic evaluations however are needed for comparing WGS versus WES and confirm the present conclusions.

Trauma is a hidden epidemic and a public health concern in Canada and globally. To address the pervasiveness of trauma in general and clinical populations, a trauma-informed approach (TIA) has been widely promoted in the field of mental health (MH). This study explores how a TIA has been incorporated in Canadian MH policies across all provinces and territories, and in both government and non-government organizations. A systematic mapping review in multiple search sites resulted in a total of 60 TIA policy documents in MH policies. The findings indicated that despite the broad range of the search period which went back as far as the 1980s, TIA policies started emerging in 2010 in the field of Canadian MH. Our research findings also showed an increased understanding of a broad definition and various types of trauma and an acknowledgement of its causes and impacts on multiple levels. This highlighted the importance of all levels of services in TIA. Through this search, we identified the widespread use of different terminologies to refer to TIA. This may create confusion about what TIA means in policy, research, and practice. We propose areas for improvement such as including experiences of marginalized populations, explicitly centering cultural and gender sensitive approaches in TIA policy initiatives, clarifying the standard definition of TIA and its implementation services, and establishing indicators and evaluation methods for future research and policy directions.

Background Mild cognitive impairment (MCI) is a cognitive state falling between normal aging and dementia. The relation between alcohol intake and risk of MCI as well as progression to dementia in people with MCI (PDM) remained unclear. Objective To synthesize available evidence and clarify the relation between alcohol intake and risk of MCI as well as PDM. Method We searched electronic databases consisting of PubMed, EMBASE, Cochrane Library, and China Biology Medicine disc (CBM) from inception to October 1, 2019. Prospective studies reporting at least three levels of alcohol exposure were included. Categorical meta-analysis was used for quantitative synthesis of the relation between light, moderate and heavy alcohol intake with risk of MCI and PDM. Restricted cubic spline and fixed-effects dose-response models were used for dose-response analysis. Result Six cohort studies including 4244 individuals were finally included. We observed an unstable linear relation between alcohol intake (drinks/week) and risk of MCI (P linear = 0.0396). It suggested that a one-drink increment per week of alcohol intake was associated with an increased risk of 3.8% for MCI (RR, 1.038; 95% CI 1.002-1.075). Heavy alcohol intake (> 14 drinks/week) was associated with higher risk of PDM (RR = 1.76; 95% CI 1.10-2.82). And we found a nonlinear relation between alcohol intake and risk of PDM. Drinking more than 16 drinks/week (P nonlinear = 0.0038, HR = 1.42; 95% CI 1.00-2.02), or 27.5 g/day (P nonlinear = 0.0047, HR = 1.46; 95% CI 1.00-2.11) would elevate the risk of PDM. Conclusion There was a nonlinear dose-response relation between alcohol intake and risk of PDM. Excessive alcohol intake would elevate the risk of PDM.

Background There is a growing body of literature that describes, applies, and evaluates applications of health-system priority-setting frameworks in different contexts. However, little explicit focus has been given to examining operationalization of the stakeholder participation component of these frameworks. The literature identifies the public as a stakeholder group and recommends their participation when applying the frameworks. Methods We conducted a scoping review to search the PubMed, EMBASE, HealthSTAR, Medline, and PsycINFO databases for cases where priority-setting frameworks were applied (2000–2017). We aimed to synthesize current literature to examine the degree to which the public and vulnerable populations have been engaged through applications of these frameworks Findings The following stakeholders commonly participated: managers, administrators/coordinators, clinicians/physicians, non-physician health care providers, health economists, academics/researchers, experts, decision-makers, and policy-makers. Few papers reported on public participation, and even fewer identified vulnerable groups that participate. Stakeholders were most commonly reported to participate in identifying areas for prioritization. Conclusions While the frameworks were developed with stakeholder participation in mind, in practice not all stakeholders are participating in priority-setting processes as envisioned by the frameworks. The public and vulnerable groups do not consistently participate, challenging the utility of the participation component of frameworks in guiding stakeholder participation in health-system priority setting. Frameworks can be more explicit about which stakeholders should participate and detailing how their participation should be operationalized.

Introduction Over 2 million people in high-income countries live with HIV. Early diagnosis and treatment present benefits for infected subjects and reduce secondary transmissions. Cost-effectiveness analyses are important to effectively inform policy makers and consequently implement the most cost-effective programmes. Therefore, we conducted a systematic review regarding the cost-effectiveness of HIV screening in high-income countries. Methods We followed PRISMA statements and included all papers evaluating the cost-effectiveness of HIV screening in the general population or in specific subgroups. Results Thirteen studies considered routine HIV testing in the general population. The most cost-effective option appeared to be associating one-time testing of the general population with annual screening of high-risk groups, such as injecting-drug users. Thirteen studies assessed the cost-effectiveness of HIV screening in specific settings, outlining the attractiveness of similar programmes in emergency departments, primary care, sexually transmitted disease clinics and substance abuse treatment programmes. Discussion Evidence regarding the health benefits and cost-effectiveness of HIV screening is growing, even in low-prevalence countries. One-time screenings offered to the adult population appear to be a valuable choice, associated with repeated testing in high-risk populations. The evidence regarding the benefits of using a rapid test, even in terms of cost-effectiveness, is growing. Finally, HIV screening seems useful in specific settings, such as emergency departments and STD clinics.

Notwithstanding important contributions of the Triple Aim, uncritical enthusiasm regarding the implications of the framework may be leading to inconsistent use, particularly when applied at the health system level, which goes beyond the original positioning of the framework as a strategic organizing principle to guide improvement initiatives at the organizational or local community level. We systematically identified uses of the Triple Aim that extended beyond its original intention to focus on uses at the whole health system level, to assess convergence and divergence with the original definition. We also attempted to identify consistencies in the way the Triple Aim was adapted for different contexts and settings. Data sources were indexed databases, web search engines, and international experts. Forty-seven articles were included in the analysis. We found that the definition of the Triple Aim has been subject to important modifications when the framework is used to define goals for whole health care systems or globally. Despite widespread recognition of the name, what constitutes the Triple Aim framework varies. We identified the need to consider the inclusion of at least two additional aims of health care systems – the provider experience of care, and the desire to achieve health equity for populations.

Introduction Population management (PM) initiatives are introduced in order to create sustainable health care systems. These initiatives should focus on the continuum of health and well-being of a population by introducing interventions that integrate various services. To be successful they should pursue the Triple Aim, i.e. simultaneously improve population health and quality of care while reducing costs per capita. This study explores how PM initiatives measure the Triple Aim in practice. Method An exploratory search was combined with expert consultations to identify relevant PM initiatives. These were analyzed based on general characteristics, utilized measures and related selection criteria. Results In total 865 measures were used by 20 PM initiatives. All quality of care domains were included by at least 11 PM initiatives, while most domains of population health and costs were included by less than 7 PM initiatives. Although their goals showed substantial overlap, the measures applied showed few similarities between PM initiatives and were predominantly selected based on local priority areas and data availability. Conclusion Most PM initiatives do not measure the full scope of the Triple Aim. Additionally, variety between measures limits comparability between PM initiatives. Consensus on the coverage of Triple Aim domains and a set of standardized measures could further both the inclusion of the various domains as well as the comparability between PM initiatives.

Reports have attributed a public health tragedy in Greece to the Great Recession and the subsequent application of austerity programs. It is also claimed that the comparison of Greece with Iceland and Finland—where austerity policies were not applied—reveals the harmful effect of austerity on health and that by protecting spending in health and social budgets, governments can offset the harmful effects of economic crises on health. We use data on life expectancy, mortality rates, incidence of infectious diseases, rates of vaccination, self-reported health and other measures to examine the evolution of population health and health services performance in Greece, Finland and Iceland since 1990–2011 or 2012—the most recent years for which data are available. We find that in the three countries most indicators of population health continued improving after the Great Recession started. In terms of population health and performance of the health care system, in the period after 2007 for which data are available, Greece did as good as Iceland and Finland. The evidence does not support the claim that there is a health crisis in Greece. On the basis of the extant evidence, claims of a public health tragedy in Greece seem overly exaggerated.