Palliative care national plan implementation through stakeholder analysis.

BACKGROUND: National palliative care plans depend upon stakeholder engagement to succeed. Assessing the capability, interest, and knowledge of stakeholders is a crucial step in the implementation of public health initiatives, as recommended by the World Health Organisation. However, utilising stakeholder analysis is a strategy underused in public palliative care. OBJECTIVE: To conduct a stakeholder analysis characterising a diverse group of stakeholders involved in implementing a national palliative care plan in three rural regions of an upper-middle-income country. METHODS: A descriptive cross-sectional study design, complemented by a quantitative stakeholder analysis approach, was executed through a survey designed to gauge stakeholders' levels of interest and capability in relation to five fundamental dimensions of public palliative care: provision of services, accessibility of essential medicines, palliative care education, financial support, and palliative care vitality. Stakeholders were categorised as promoters (high-power, high-interest), latent (high-power, low-interest), advocates (low-power, high-interest), and indifferent (low-power and low-interest). Stakeholder self-perceived category and knowledge level were also assessed. RESULTS: Among the 65 surveyed stakeholders, 19 were categorised as promoters, 34 as advocates, 9 as latent, and 3 as indifferent. Stakeholders' self-perception of their category did not align with the results of the quantitative analysis. When evaluated by region and palliative care dimensions the distribution of stakeholders was nonuniform. Palliative care funding was the dimension with the highest number of stakeholders categorised as indifferent, and the lowest percentage of promoters. Stakeholders categorised as promoters consistently reported a low level of knowledge, regardless of the dimension, region, or their level of interest. CONCLUSIONS: Assessing the capability, interest, and knowledge of stakeholders is a crucial step when implementing public health initiatives in palliative care. It allows for a data-driven decision-making process on how to delegate responsibilities, administer financial resources, and establish governance boards that remain engaged and work efficiently.

Inclusion of essential components of the World Health Organization palliative care development model in national palliative care plans: A documentary analysis in 31 countries.

CONTEXT: The World Health Organization has proposed a new model for the development of palliative care. Whether the current national palliative care plans of Member States are aligned or need to be reformed to meet the new model is unknown. METHODS: We conducted a documentary analysis of national palliative care plans based on an analytic framework structured with the elements recommended by the World Health Organization: (a) building a plan, (b) plan components, and (c) plan implementation. We conducted a categorical analysis of national plans by subgroups according to income and development level of palliative care. FINDINGS: We identified 112 countries with a palliative care plan, of which 31 were included in the analysis. Of these 31 plans, only 8 had the six components proposed by the World Health Organization, 29 reported an implementation strategy, 23 were aligned with the country's national public health plan, and 15 allocated financial resources for plan implementation. All the national plans assessed included the component provision of palliative care in integrated health services; 93%, education and training; 83%, research; 80%, empowered people and communities; 54%, health policies related to palliative care, and 48% use of essential medicines. CONCLUSIONS: National palliative care plans include the two new development components, but few are fully aligned with the 2021 World Health Organization's model.

An introduction to therapeutic approaches to vascular cognitive impairment.

Vascular cognitive impairment (VCI), encompassing vascular dementia, has been claimed as the "second-most common dementia" after Alzheimer Disease. Whether or not this is true, the clinical picture of most dementia in older people includes vascular disease. There are no validated pharmacological targets for prevention or treatment of VCI. This has inspired a multitude of potential treatment approaches, reflected by the articles in this Special Issue. These include in vitro testing of the novel oral anticoagulant dabigatran for protection against ß-amyloid neurotoxicity, and an overview of neuroinflammation in VCI and the role of circulating markers (PIGF, VEGF-D) identified by the MarkVCID study. There are reviews of potential therapeutics, including adrenomedullin and nootropic preparations (exemplified by cerebrolysin). The role of sleep is reviewed, with possible therapeutic targets (5HT2A receptors). There is a clinical study protocol (INVESTIGATE-SVD) and a feasibility analysis for a secondary prevention trial in small vessel disease. Clinical data include secondary analyses of blood pressure and cerebral blood flow from a longitudinal clinical trial (NILVAD), differences between methylphenidate and galantamine responders and non-responders (STREAM-VCI), appraisal of treatment approaches in India, and primary outcomes from a randomised trial of Argentine tango dancing to preserve cognition in African American women (ACT). Treating vascular disease has great potential to improve global cognitive health, with public health impacts alongside individual benefit. Vascular disease burden varies across populations, offering the possibility of proactively addressing health inequity in dementia using vascular interventions. The next 5-10 years will witness cost-effective lifestyle interventions, repurposed drugs and novel therapeutics.

Qualitative analysis of Iranian sixth five-year economic, social, and cultural development plan from universal health coverage perspective.

BACKGROUND: This research analyzed the Sixth Five-Year Economic, Social, and Cultural Development Plan of the Islamic Republic of Iran (6NPD) to shed light on how the plan addresses the Universal Health Coverage (UHC). METHODS: This research was a qualitative study. We systematically analyzed 'Secs. 14 -Health, Insurance, Health & Women, and Family' in the 6NPD. Through a content analysis, we converted this section into meaning units and coded them. Coding was guided through the conceptual framework 'Six Building Blocks of Health System' and the key principles of UHC. RESULTS: Six themes and twenty-one subthemes were identified. The subthemes of financing include a fair and secured process of resource pooling, payment methods, revenue generation for the health sector, and a definition of a basic benefits package. The subthemes of governance and leadership consist of social insurance policies' integration, compliance of providers, a designation of the Ministry of Health and Medical Education (MoHME) as the regulator and the steward of health resources, a payer-provider split, and stakeholders' participation. The subthemes of health workforce emphasizes balancing the quality and quantity of the health workforce with populations' health needs and the health system's requirements. The subthemes of health information systems consist of the electronic health records for Iranians, information systems for organization and delivery functions, and information systems for the financing function. The subthemes of the organization and delivery consider improving effectiveness and efficiency of healthcare delivery, strengthening the family physician program and referral system, and extending the pre-hospital emergency system. Lastly, access to medicine focuses on the design and implementation of an essential drug list and drug systems for approving the coverage and provision of generic medicine. CONCLUSIONS: The 6NPD introduced policies for strengthening the 6 building blocks of the health system. It introduced policies to improve financing particularly resource pooling and the sustainability of financial resources. As mandated by 6NPD, centering the health system's governance/leadership in MoHME may exacerbate the existing conflict of interests and provoke various arguments, which impede the enforcement of rules and regulation. The 6NPD is a step forward in terms of improving financial protection, yet several other policies need to be made to adequately meet the requirement of UHC regarding equity and effective coverage.

Is it too expensive to fight cancer? Analysis of incremental costs and benefits of the Croatian National Plan Against Cancer.

This cost-effectiveness study analyses the expected impacts of activities proposed by the Croatian National Plan Against Cancer (NPAC) on cancer incidence and survival rates, as related to their respective costs. We evaluated the impact of the NPAC on two main outcomes, namely, reduced incidence and the improved survival of cancer patients, expressed as life years gained (LYGs), which enabled the calculation of incremental cost-effectiveness ratios (ICERs) in the form of cost per LYG. In the analysis of costs, we considered both the direct costs of NPAC activities as well as the wider indirect societal costs of cancer, thus permitting the calculation of the ICER both from the narrower national health insurer's perspective (accounting only for the direct costs) and the wider societal perspective (accounting both for the direct and indirect costs). We estimated that on average, for all patients benefiting from the implementation of the NPAC in Croatia, an additional LYG would be yielded at the additional cost of €1.021 (societal perspective). The NPAC can, for some sites, even be considered a dominant intervention due to the negative cost/LYG ratio, meaning that it generates additional LYGs while at the same time, reducing total societal costs. Taking a narrower health insurer's perspective (i.e., accounting only for the direct costs), the NPAC produces an additional LYG at an additional cost of €1.408. Both cost per LYG estimates can be considered cost-effective investment options.

Conclusions: Do we eat them or watch them, or both? Challenges for conservation of sharks in Mexico and the NEP.

Mexico is a country that makes heavy use of the shark populations that inhabit the southern portion of the Northeast Pacific Ocean (NEP). Shark meat has become an essential food source in this country, while shark fins are used to supply traditional Asian markets. In addition to consumptive utilization, charismatic shark species support an ecotourism industry that has gained significance in several tourist resorts across the country. In this concluding chapter, we recap the contents of chapters included in volumes 83 and 85 in the Advances in Marine Biology series. The chapters in these volumes address biodiversity, conservation genetics, trophic ecology, migratory movements, fisheries, and shark ecotourism, allowing us to understand the state of knowledge relevant to human: shark interactions in the Mexican Pacific. We discuss the challenges for the sustainable use and conservation of sharks in the southern NEP and highlight the need for a more holistic management approach that includes economic and social factors. To meet these challenges, we recommend updating the Mexican National Plan of Action for Sharks published in, 2004, such that it may continue serving as a roadmap for the conservation and management of sharks in the southern NEP during the years to come.

Towards the development of Vietnam's national dementia plan-the first step of action.

OBJECTIVE: To foster a national dialogue on addressing dementia as an emerging public health problem and formulating a strategy for developing Vietnam's national dementia plan. METHODS: In September 2018, the Vietnamese National Geriatric Hospital supported by University staff in Australia and the United States organised the first Vietnam National Dementia Conference in Hanoi. RESULTS: Over 270 Vietnamese dementia stakeholders and international dementia experts participated in the conference. The participants agreed dementia was a public health priority in Vietnam and identified the need for the development of Vietnam's national dementia plan. Policymakers supported positioning dementia as a priority in the national health agenda. Research institutions created collaboration to generate scientific information for policymaking process. Funding and international supports were obtained to develop Vietnam's national dementia plan. CONCLUSION: Strong leadership, stakeholder engagement and international support are critical in raising awareness and advocating for the development of Vietnam's national dementia plan.

A review of national plans of action for nutrition in Southeast Asian countries

@#This review describes national plans of action for nutrition (NPANs) in six Southeast Asia countries (Indonesia, Malaysia, Myanmar, Philippines, Thailand and Vietnam) in order to provide an understanding of the approach and framework undertaken by these countries in the formulation and implementation of NPANs, as well as the similarities and differences in various NPAN components. The six countries recognised the persistent undernutrition and escalating rates of obesity and other diet-related chronic diseases as the key drivers for nutrition action plan implementation. The prioritisation of nutrition interventions outlined in these NPANs are based on respective country context and needs. Although differing in strategies and targets set, these countries show similarities in several components including objectives, stakeholder involvement, nutritional issues to be addressed, implementation, monitoring and evaluation mechanism, programme/ activities identified and challenges in implementing NPANs. Countries have recognised that effective implementation, monitoring and evaluation are essential to successfully address both extremes of the challenging nutrition situation. Several important similarities in the NPANs studied suggest that closer collaboration among countries and stakeholders on NPANs would be beneficial. Opportunities should be created for periodic exchanges to enable sharing of experiences in the development and implementation of NPANs among the countries. Recommendations and conclusions drawn from this review could serve as useful reference for nutrition policy and planning in the future.

[From scientific evidence to clinical recommendations: outlooks and challenges for the SIN (Italian Society of Nephrology)].

According to the new Clinical Guidelines National Plan, Scientific Societies take on a key role in creating and implementing guidelines within the National Health System. We chart the efforts of our Society in creating the right kind of expertise and closing the gap with Scientific Societies abroad.

Today's vaccination policies in Italy: The National Plan for Vaccine Prevention 2017-2019 and the Law 119/2017 on the mandatory vaccinations.

The National Plan for Vaccine Prevention 2017-2019 has expanded the vaccination offer including new vaccines, enlarging the target population and introducing for the first time in Italy a life-course approach to vaccination. A "lifetime immunization schedule" is aimed to reduce the burden and the related costs of vaccine-preventable diseases through effective vaccination programs. However, to counteract the national steady downward trend in the uptake of vaccinations that caused a drop of the vaccination coverage below the 95% threshold to allow herd immunity, it was decided to make 10 vaccinations mandatory by the law 119/2017. In particular, in addition to already mandatory vaccinations against diphtheria, tetanus, hepatitis B and poliomyelitis, those against measles, mumps, rubella (MMR), varicella, pertussis and Haemophilus influenzae type b (Hib) were added to the list. According to the law, all unvaccinated children cannot attend preschool services until the age of 6 years and fines (from 100 to 500 Euros) are provided for parents. Moreover, this law provided, in its first application, a catch-up campaign for children up to the age of 16 years and the free-of-charge offer of all mandatory and recommended vaccines to each child not yet vaccinated according to the previous NPVP. The NPVP includes also several at risk categories, such as pregnant women, healthcare workers and subjects suffering from chronic diseases, to whom specific vaccinations, free of charge, are offered. The vaccinations of pregnant women have different purposes. In order to decrease the pertussis risk in newborns in the first months of life, a booster immunization of DTPa is recommended, at every pregnancy, between week 27th and 36th. Instead, the influenza vaccine administration to pregnant women during the second or third quarter is mainly aimed to avoid the risk of serious disease complications for both the mother and the fetus. Another group of at risk subjects included in the NPVP is that made up by healthcare workers. According to the plan, "an adequate immunization of the healthcare workers is essential for the prevention and control of infections (anti-hepatitis B, anti-influenza, anti-measles-mumps-rubella, anti-varicella, anti-pertussis)". Finally, almost all the vaccinations foreseen by the NPVP are offered free of charge to subjects suffering from specific diseases. These include cardiovascular, respiratory, hepatic, neoplastic, renal and metabolic disorders, in addition to immunosuppression that exposes them to an increased risk of contracting invasive infectious diseases.

[Risk factors and determinants of health]. / Facteurs de risque et déterminants en santé.

Prevention is everyone's concern. Whether decisions are made on a collective or individual level, they can all help to improve health. Choosing prevention interventions which are proven to be effective and intervening early are two essential elements for an ambitious policy. Particular attention must be paid to behaviour which is known to be harmful for health and on which it is possible to act: diet, smoking and alcohol.

Delivering the Transforming Care programme: a case of smoke and mirrors?

SummaryThe Transforming Care national plan for England to develop community services and close hospital beds for people with intellectual disabilities and/or autism was published in October 2015 and is due to finish in March 2019. In this editorial the key plan objectives are evaluated, with particular reference to people with intellectual disabilities and/or autism who offend or are at risk of offending. The conclusion is that, to date, the plan has failed to meet its targets to reduce the number of in-patients with intellectual disabilities and/or autism and to invest in community services, and the number of patients in independent sector beds is increasing.Declaration of interestThe author is employed by Northumberland, Tyne and Wear National Health Service Foundation Trust, however the opinions expressed in this article are the author's own and do not reflect the views of the Trust.

A Review of Rare Disease Policies and Orphan Drug Reimbursement Systems in 12 Eurasian Countries.

Background: Despite international initiatives on collaboration within the field of rare diseases, patient access to orphan medicinal products (OMPs) and healthcare services differ greatly between countries. This study aimed to create a comprehensive and in-depth overview of rare diseases policies and reimbursement of OMPs in a selection of 12 countries in the Western Eurasian region: Armenia, France, Germany, Kazakhstan, Latvia, The Netherlands, Poland, Romania, Russia, Turkey, Ukraine, and the United Kingdom. Methods: A systematic literature review was performed and an analysis of publicly available legislative and rare disease health policy data was undertaken in five focus areas: rare disease definition, newborn screening, registries, national plans, access to/reimbursement of OMPs. Results: Screening programs are broadly implemented but the number of screened diseases differs significantly (2-35 diseases), either between EU and non-EU countries, between EU member states and sometimes even within a single country. In most countries rare disease registries are operating with regional, national, European or worldwide coverage. The number of rare disease registries is growing, as a result of the National Plans (EU) and increased international scientific cooperation. France, Russia, and Poland have a centrally acting registry. National plans are present in all EU countries but implementation varies and is ongoing. The number of reimbursed OMPs in the selected countries ranges from nearly all available OMPs in the Netherlands, Germany, and France to zero in Armenia. Reimbursement rules differ considerably regionally and a trend is observed of reimbursement conditions getting stricter for expensive (orphan) drugs. Discussion: Inequality in patient access to new OMPs still exists due to variations in national policies, healthcare budgets, health insurance, and reimbursement systems. The observed differences are challenging for rare disease patients, health authorities and manufacturers alike. Progress can be seen, however, and international cooperation and harmonization is slowly but steadily expanding in the rare disease arena.

Highlights from the International Summit on Intellectual Disability and Dementia Implications for Brazil.

In October of 2016, an interdisciplinary group representing North and South American and European countries met in Glasgow, Scotland, to scrutinize universal issues regarding adults with intellectual disability (ID) affected by dementia and to produce recommendations and guidelines for public policy, practice, and further research. The aim of this paper is to apprise relevant outcomes of the Summit targeting Brazilian researchers, clinicians, and nongovernmental organizations in the field of ageing and dementia that are committed to developing the Brazilian national dementia plan. Three core themes were covered by the Summit: i) human rights and personal resources, ii) personalized services and caregiver support, and iii) advocacy and public impact. The exploration of the themes highlighted variations across countries, and revealed consensual views on matters such as international networks, guidance for practices, and advocacy on behalf of both people with ID affected by dementia, and their families. The authors outline the challenges Brazil must confront regarding ageing and dementia and proffer recommendations to address the needs of adults with ID affected by dementia within this scenario; both of which would help in developing the Brazilian national dementia plan.

Em outubro de 2016, um grupo interdisciplinar representando países da América do Norte e do Sul, bem como Europeus reuniu-se em Glasgow, na Escócia, para examinar questões relativas aos adultos com deficiência intelectual (DI) afetados por demência e para produzir recomendações e diretrizes referentes às políticas públicas, práticas e pesquisa. O objetivo deste artigo é informar os resultados relevantes da Cúpula aos pesquisadores, clínicos e organizações não-governamentais brasileiras que atuam no campo do envelhecimento e da demência, e estão envolvidos no desenvolvimento do plano nacional de demência. Três temas centrais foram discutidos na Cúpula: i) Direitos humanos e recursos pessoais, ii) Serviços personalizados e apoio aos cuidadores, e iii) Advocacia e impacto público. A exploração dos temas destacou as variações entre os países e revelou visões consensuais em questões como redes internacionais, orientação para práticas e defesa de direitos em nome de pessoas com DI afetadas por demência e suas famílias. Os autores descrevem os desafios que o Brasil deve enfrentar em relação ao envelhecimento e à demência e apresentam recomendações para atender às necessidades de adultos com DI afetados por demência nesse cenário; ambos aspectos contribuem para o desenvolvimento do plano nacional de demência.

Highlights from the International Summit on Intellectual Disability and Dementia: implications for Brazil / Síntese da Cúpula Internacional sobre Deficiência Intelectual e Demência: implicações para o Brasil

ABSTRACT In October of 2016, an interdisciplinary group representing North and South American and European countries met in Glasgow, Scotland, to scrutinize universal issues regarding adults with intellectual disability (ID) affected by dementia and to produce recommendations and guidelines for public policy, practice, and further research. The aim of this paper is to apprise relevant outcomes of the Summit targeting Brazilian researchers, clinicians, and nongovernmental organizations in the field of ageing and dementia that are committed to developing the Brazilian national dementia plan. Three core themes were covered by the Summit: i) human rights and personal resources, ii) personalized services and caregiver support, and iii) advocacy and public impact. The exploration of the themes highlighted variations across countries, and revealed consensual views on matters such as international networks, guidance for practices, and advocacy on behalf of both people with ID affected by dementia, and their families. The authors outline the challenges Brazil must confront regarding ageing and dementia and proffer recommendations to address the needs of adults with ID affected by dementia within this scenario; both of which would help in developing the Brazilian national dementia plan.

RESUMO Em outubro de 2016, um grupo interdisciplinar representando países da América do Norte e do Sul, bem como Europeus reuniu-se em Glasgow, na Escócia, para examinar questões relativas aos adultos com deficiência intelectual (DI) afetados por demência e para produzir recomendações e diretrizes referentes às políticas públicas, práticas e pesquisa. O objetivo deste artigo é informar os resultados relevantes da Cúpula aos pesquisadores, clínicos e organizações não-governamentais brasileiras que atuam no campo do envelhecimento e da demência, e estão envolvidos no desenvolvimento do plano nacional de demência. Três temas centrais foram discutidos na Cúpula: i) Direitos humanos e recursos pessoais, ii) Serviços personalizados e apoio aos cuidadores, e iii) Advocacia e impacto público. A exploração dos temas destacou as variações entre os países e revelou visões consensuais em questões como redes internacionais, orientação para práticas e defesa de direitos em nome de pessoas com DI afetadas por demência e suas famílias. Os autores descrevem os desafios que o Brasil deve enfrentar em relação ao envelhecimento e à demência e apresentam recomendações para atender às necessidades de adultos com DI afetados por demência nesse cenário; ambos aspectos contribuem para o desenvolvimento do plano nacional de demência.

A global systematic scoping review of studies analysing indicators, development, and content of national-level physical activity and sedentary behaviour policies.

BACKGROUND: National policy approaches to physical activity (PA) promotion and sedentary behaviour (SB) reduction are needed to address rising rates of non-communicable diseases. Understanding the policy process and impact through robust research and evaluation is crucial for facilitating successful reforms in national health policy. This scoping review, therefore, aimed to map the evidence on indicators, development, and content of national PA and/or SB policies globally. METHODS: A systematic search of academic and grey literature was conducted through six bibliographic databases, Google, and websites of three large organisations for PA promotion. RESULTS: Out of 24,872 screened documents, 203 publications from 163 studies were selected. The selected studies investigated PA/SB policies in 168 countries worldwide, and we provided summary results for each of the countries. Overall, 69, 29, and 2% of the analyses of national PA/SB policies were conducted for high-, middle-, and low-income countries, respectively. Twenty-two percent of the studies mentioned SB policies as part of their analysis, with only one study focusing solely on assessing SB policies. Operational definitions of policy were found in only 13% of publications. Only 15% of the studies used a conceptual or theoretical framework. A large variety of methods were used for data collection and analysis of PA/SB policy. CONCLUSIONS: We found that PA policy research is much more developed than it was considered several years ago. Research around SB policies is still in its infancy, but it seems to have experienced some positive progress in the last few years. Three key issues were identified that should be addressed in further research: [i] there is a lack of PA/SB policy research in low- and middle-income countries, which is an important limitation of the current body of evidence; [ii] the definition of policy varied significantly across studies, and most studies did not rely on any theoretical framework, which may impede cross-study comparisons; and [iii] studies have used a variety of methods to analyse policy, which may also cause problems with comparability. Future PA/SB policy research should aim towards a clearer conceptualisation of policy, greater reliance on existing theoretical frameworks, and the use and further development of standardised methods for PA/SB policy analysis.

Herpes zoster vaccine: a protection for the elderly.

The Herpes Zoster vaccine is strongly recommended by the World Health Organization to promote healthy aging by preventing the corresponding age- related disease, also named shingles. The disease is due to the endogenous reactivation of Varicella Zoster Virus, the causal agent of chickenpox, that becomes latent at the peripheral nervous system level. Here, owing to the host's cell-mediated immunity, it may be confined for several decades. However, the immune senescence allows the possibility of virus reactivation, causing the onset of neuropathic pain and skin rash that characterize the acute disease. Sometimes, the neuralgia becomes chronic causing postherpetic neuralgia that has a significant impact on the quality of patient life, analogously to the ophthalmic HZ, a particularly feared form of disease. Due to the causal relationship between decreasing immune defenses and virus reactivation with disease onset, the incidence of Herpes Zoster, in Italy now equal to 6.42 (95%CI: 5.93-6.95) cases per 1,000 people per year will increase steadily in the future due to the longevity rise of the population. Considering epidemiological impact, complications and sequelae in the short- and long-term, costs of clinical-therapeutical management of patients, and, above all, the poor effectiveness of available therapy the only effective intervention is vaccination of the elderly. Currently in the European Union, there is only one vaccine for Herpes Zoster prevention, formed by live attenuated OKA-Merck virus strain that is also used for paediatric vaccine. According to the Health Technology Assessment surveys, the intervention cost (based on "Quality Adjusted Life Years") is clearly below the discriminating threshold value to judge the feasibility and, as predicted by the Italian National Plan of Vaccinal Prevention 2017-2019, the vaccine is offered free to all subjects >65 years.

[Healthcare services for people in Lower Saxony (Germany) suffering from a rare disease: Findings from a survey among medical professionals]. / Die Versorgung von Menschen mit seltenen Erkrankungen in Niedersachsen: Ergebnisse einer Ärztebefragung.

BACKGROUND: In the European Union, about 30 million people are affected by one of the 7,000 to 8,000 diseases being defined as rare. In Germany alone, an estimated 4 million people suffer from a rare disease. In many cases, therapeutic options and knowledge of specific rare diseases are strongly limited. OBJECTIVE: The aim of this study was to identify the deficits and challenges confronting healthcare services for people suffering from a rare disease from the medical professional's perspective. METHOD: As many as 530 medical professionals were invited to complete an online questionnaire, which was also available on the website of the General Medical Council of Lower Saxony. The questionnaire focused on questions in the following fields: structure of the medical care system; diagnosis and therapy; information sources and information exchange; and improvement of healthcare situation. Data were analyzed using IBM SPSS 22. RESULT: We received 65 completed questionnaires. The evaluation indicates deficits in the medical services provided for people with a rare disease and shortcomings in the communication between clinical disciplines. In addition, diagnostic and therapeutic options are limited, and quality-tested information is rare. CONCLUSION: Many of the identified deficits have already been addressed in the German national plan of action for people affected by rare diseases. Furthermore, newly discovered deficits have been evaluated. The German government implemented healthcare structures to improve healthcare services for people with rare diseases. However, budget deficits for specialized structures have occurred inhibiting the expansion of healthcare services. Moreover, many patients need systemic treatment requiring the further development of interdisciplinary care.

Report on milestones for care and support under the U.S. National Plan to Address Alzheimer's Disease.

INTRODUCTION: Under the U.S. national Alzheimer's plan, the National Institutes of Health identified milestones required to meet the plan's biomedical research goal (Goal 1). However, similar milestones have not been created for the goals on care (Goal 2) and support (Goal 3). METHODS: The Alzheimer's Association convened a workgroup with expertise in clinical care, long-term services and supports, dementia care and support research, and public policy. The workgroup reviewed the literature on Alzheimer's care and support; reviewed how other countries are addressing the issue; and identified public policies needed over the next 10 years to achieve a more ideal care and support system. RESULTS: The workgroup developed and recommended 73 milestones for Goal 2 and 56 milestones for Goal 3. DISCUSSION: To advance the implementation of the U.S. national Alzheimer's plan, the U.S. government should adopt these recommended milestones, or develop similar milestones, to be incorporated into the national plan.