Primary mental healthcare for adults with mild intellectual disabilities: Patients' perspectives.

BACKGROUND: People with mild intellectual disabilities (MID) experience more mental health (MH) problems than the general population but often do not receive appropriate primary MH care. Primary MH care is essential in integrative MH care and, therefore, demands high quality. To improve primary MH care for this patient group, account must be taken of the experiences of people with MID. So far, their perspectives have been largely absent from primary MH care research. OBJECTIVES: To explore patients' experiences, needs, and suggestions for improvement regarding primary MH care for people with MID. METHODS: Qualitative study among adults with MID who visited their GP with MH problems in the previous 12 months. Semi-structured interviews were conducted using a guide based on Person-Centred Primary Care Measures. Transcripts were analysed thematically. RESULTS: The 11 interviews that we conducted revealed four themes. The first theme, cumulative vulnerability, describes the vulnerability - instigated by the MID and reinforced by MH problems - experienced on a GP visit. The other themes (needs regarding the GP, needs regarding the network, self-determination) arise from this vulnerability. CONCLUSION: People with both MID and MH problems are extra vulnerable in primary care but desire self-determination regarding their MH care trajectory. This requires investment in a good GP-patient relationship and the organisation of additional support to meet these patients' needs, for which collaborative care with the patient, the patient's network, and other (care) professionals is of utmost importance.

People with mild intellectual disabilities (MID) feel more vulnerable visiting their GP with mental health (MH) problems than with somatic problemsPatients with MH problems report additional needs and expectations regarding their care and support networkGPs face challenges in coordinating care for patients with both MID and MH problems.

Core elements and potential of nurse-led care models in residential long-term care: A scoping review.

AIMS AND OBJECTIVE: To identify and summarise core elements, resident-, staff- and process-related outcomes and challenges of nurse-led care models in residential long-term care. BACKGROUND: Due to demographic trends, the complexity of residential long-term care has increased. To address this complexity, the implementation of nurse-led care models has been recommended. DESIGN: Scoping review. METHODS: A systematic search was conducted of English and German articles in CINAHL via EBSCO, MEDLINE via PubMed, Cochrane Library and Scopus. Forward and backward citation tracking via reference lists and Google Scholar supplemented the search. The final update was made on 19 January 2021. To draw conclusions about the potential of nurse-led care models, evaluation studies of the described models for residents in nursing homes were included. Full texts were independently screened and assessed for methodological quality. Data were extracted and summarised in tables and synthesised for analysis. The core elements of the models were described using the Sustainable intEgrated chronic care modeLs for multimorbidity: delivery, FInancing and performancE (SELFIE) framework. The review followed the PRISMA-ScR guideline. RESULTS: We included 13 studies of 12 nurse-led care models. The different models comprised many of the core elements suggested in the SELFIE framework, particularly in the components service delivery, workforce, and leadership and governance. The studies reported a broad range of resident-, staff- and process-related outcomes and challenges considered relevant to the success of the models. CONCLUSIONS: Studies evaluating nurse-led care models in nursing homes are limited and of moderate quality. This review demonstrates that nurse-led care models include many elements for care coordination and could improve resident-, staff- and process-related outcomes. RELEVANCE TO CLINICAL PRACTICE: This review highlights that nurse-led care models share common core elements despite their heterogeneity. It also shows that highly qualified nurses in nurse-led care models can advance nursing practice in nursing homes.

The health of detainees and the role of primary care: Position paper of the European Forum for Primary Care.

This position paper aims to increase awareness among primary care practitioners and policymakers about the specific and complex health needs of people who experience incarceration. We focus on the importance of primary care and of continuity of care between prison and community. We highlight what is known from the literature on the health of people who experience incarceration, on the organisation of prison health care, and on the role of primary care both during and after detention. We present three case descriptions of detainees' encounters with the organisation of prison health care in three European countries. Finally, we describe the position that the European Forum for Primary Care takes. Prisoners and ex-prisoners have a worse physical and mental health compared with a cross-section of the population. However, access to good quality treatment and care is often worse than in the outside situation. In particular, well-organised primary care in the prison context could benefit prisoners and, indirectly, society at large. Moreover, continuity of care between the community and the prison situation needs improvement.

Paediatric Care in The Netherlands: State of Affairs, Challenges and Prospects.

There are many societal developments in The Netherlands, such as a rising and changing demand for care and support and a paradigm shift from curation to prevention, that currently-and in the near future-will have an impact on paediatric care. These developments both reveal potential risks in paediatric care and affect practices that require future improvement. In this viewpoint, we first present the most pressing developments for paediatrics, and we demonstrate why and how Dutch paediatricians have renewed their vision on paediatric care in order to cope with a changing society. It is a vision towards the year 2030 that gives children and paediatric care the right place in the Dutch healthcare landscape to guarantee accessible, high-quality, and effective care for every child at the right time. Realising this renewed vision requires however not only an adjustment from paediatricians and paediatricians in training, but also from professionals who work with them and from the Government that can facilitate or accelerate the implementation of the renewed vision in various ways.

An Opportunity to Harmonise the Approach to Patients' Care Pathways for Rare and Complex Diseases: RarERN Path™.

As a matter of fact, organisation always matters when discussing about healthcare, since it is fundamental in order to ensure the delivery of the most appropriate care to patients in the most appropriate way. Unfortunately, the pandemic brought by the severe acute respiratory syndrome-coronavirus 2 (SARS-CoV-2) imposed a huge reorganisation of the healthcare systems, with several repercussions on the care of several chronic conditions, that were in many cases discontinued. This was the case of rare diseases (RDs), conditions that even under normal circumstances can experience diagnostic delays and difficulties in receiving appropriate care. The context of the European Reference Networks (ERNs) represents one of the most appropriate settings for the creation of organisational reference models for patient care pathways (PCP). As a matter of fact, the main mission of ERNs is to improve the care of patients with RDs in Europe through a patient-centred approach, thanks to real multistakeholder involvement. For this reason, in the last years, an extensive effort has been made towards the creation of a methodological approach aimed at providing organisational reference models for PCP in RDs across the different Member States. In fact, in order to develop the reference model, a structured methodology was created to enable the design of the PCP based on a deep sharing of expertise on high-quality care and characterised by a strong patient-centred approach: RarERN Path™. Among the different stakeholders that need to be involved in planning strategic actions to ensure care also during an emergency, patients' representatives, healthcare professionals, hospital managers, and experts in healthcare organisations play a crucial role.

Characteristics of nursing home units with high versus low levels of person-centred care in relation to leadership, staff- resident- and facility factors: findings from SWENIS, a cross-sectional study in Sweden.

BACKGROUND: The context of care consists of factors that determines the extent to which staff can offer person-centred care. However, few studies have investigated factors that can explain variation in levels of person-centred care among nursing home units. The aim of this study was to explore factors characterizing nursing home units with high and low degree of person-centred care, with focus on leadership, staff, resident and facility factors. METHODS: Cross-sectional data from residents, staff, and managers in 172 randomly selected nursing homes in Sweden were collected in 2014. Activities of Daily Living Index, Gottfries' cognitive scale, Person-centred Care Assessment Tool together with demographic information and estimations of leadership engagement was used. Independent samples t-test and Chi2 test were conducted. RESULTS: Highly person-centred units were characterised by leaders engaging in staff knowledge, professional development, team support and care quality. In highly person-centred units' staff also received supervision of a nurse to a larger extent. Highly person-centred units were also characterised as dementia specific units, units with fewer beds and with a larger proportion of enrolled nurses. No differences in degree of person-centred care were seen between public or private providers. CONCLUSIONS: This study provides guidance for practitioners when designing, developing and adapting person-centred units in aged care contexts. Managers and leaders have an important role to promote the movement towards a person-centred practice of care, by supporting their staff in daily care, and engaging in staff knowledge and professional development. Targeting and adjusting environmental factors, such as provide small and dementia adapted environments to match the residents' personal preferences and capacity are also important when striving towards person-centredness.

"Top-Three" health reforms in 31 high-income countries in 2018 and 2019: an expert informed overview.

BACKGROUND: High-income countries continuously reform their healthcare systems. Often, similar reforms are introduced concomitantly across countries. Although national policymakers would benefit from considering reform experiences abroad, exchange is limited. This paper provides an overview of health reform trends in 31 high-income countries in 2018 and 2019, i.e., before Covid-19. METHODS: Information was collected from national experts from the Health Systems and Policy Monitor network. Experts were asked to report on the three "top" national health reforms 2018 and 2019. In 2019, they provided an update of 2018 reforms. Reforms were assigned to one of 11 clusters and identified as one of seven different reform types. RESULTS: 81 reforms were reported in 28 countries in 2018. 44/81 went to four clusters: 'insurance coverage & resource generation', 'governance', 'healthcare purchasing & payment', and 'organisation of hospital care'. In 2019, 86 reforms in 30 countries were reported. 48/86 fell under 'organisation of primary & ambulatory care', 'governance', 'care coordination & specialised care', and 'organisation of hospital care'. Most 2018 reforms were reported ongoing in 2019; 27 implemented; seven abandoned. Health agency-led reforms were implemented most frequently, followed by central government-legislated reforms. CONCLUSIONS: Policymakers can leverage international experience of distinct reform approaches addressing similar challenges and similar approaches to address distinct problems. Such knowledge may help inspire or support future successful health reform processes.

Drivers of successful implementation of integrated care for multi-morbidity: Mechanisms identified in 17 case studies from 8 European countries.

This paper provides a deeper understanding of the mechanisms underlying implementation strategies for integrated care. As part of the SELFIE project, 17 integrated care programmes addressing multi-morbidity from eight European countries were selected and studied. Data was extracted from 'thick descriptions' of the 17 programmes and analysed both inductively and deductively using implementation theory. The following ten mechanisms for successful implementation of integrated care were identified. With regards to service delivery, successful implementers (1) commonly adopted an incremental growth model rather than a disruptive innovation approach, and found (2) a balance between flexibility and formal structures of integration. For leadership & governance, they (3) applied collaborative governance by engaging all stakeholders, and (4) distributed leadership throughout all levels of the system. For the workforce, these implementers (5) were able to build a multidisciplinary team culture with mutual recognition of each other's roles, and (6) stimulated the development of new roles and competencies for integrated care. With respect to financing, (7) secured long-term funding and innovative payments were applied as means to overcome fragmented financing of health and social care. Implementers emphasised (8) the implementation of ICT that was specifically developed to support collaboration and communication rather than administrative procedures (technology & medical devices), and (9) created feedback loops and a continuous monitoring system (information & research). The overarching mechanism was that implementers (10) engaged in alignment work across the different components and levels of the health and social care system. These evidence-based mechanisms for implementation are applicable in different local, regional and national contexts.

Integrated Guidance for Enhancing the Care of Familial Hypercholesterolaemia in Australia.

Familial hypercholesterolaemia (FH) is a dominant and highly penetrant monogenic disorder present from birth that markedly elevates plasma low-density lipoprotein (LDL)-cholesterol concentration and, if untreated, leads to premature atherosclerosis and coronary artery disease (CAD). There are approximately 100,000 people with FH in Australia. However, an overwhelming majority of those affected remain undetected and inadequately treated, consistent with FH being a leading challenge for public health genomics. To further address the unmet need, we provide an updated guidance, presented as a series of systematically collated recommendations, on the care of patients and families with FH. These recommendations have been informed by an exponential growth in published works and new evidence over the last 5 years and are compatible with a contemporary global call to action on FH. Recommendations are given on the detection, diagnosis, assessment and management of FH in adults and children. Recommendations are also made on genetic testing and risk notification of biological relatives who should undergo cascade testing for FH. Guidance on management is based on the concepts of risk re-stratification, adherence to heart healthy lifestyles, treatment of non-cholesterol risk factors, and safe and appropriate use of LDL-cholesterol lowering therapies, including statins, ezetimibe, proprotein convertase subtilisin/kexin type 9 inhibitors and lipoprotein apheresis. Broad recommendations are also provided for the organisation and development of health care services. Recommendations on best practice need to be underpinned by good clinical judgment and shared decision making with patients and families. Models of care for FH need to be adapted to local and regional health care needs and available resources. A comprehensive and realistic implementation strategy, informed by further research, including assessments of cost-benefit, will be required to ensure that this new guidance benefits all Australian families with or at risk of FH.

RarERN Path: a methodology towards the optimisation of patients' care pathways in rare and complex diseases developed within the European Reference Networks.

BACKGROUND: In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases. OBJECTIVE: The RarERN Path methodology aims to create a single reference organisational model for patients' care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. METHODS: Starting from existing standard methods for the creation and elaboration of patients' care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients' involvement and narrative medicine and policy-makers. RESULTS: The RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1-mapping of existing patients' care pathways and patients' stories; Phase 2-design of an optimised common patients' care pathway; Phase 3-consensus on an optimised common patients' care pathway; Phase 4-key performance indicators definition; Phase 5-refinement; Phase 6-pilot phase (optional). CONCLUSION: The application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.

[Ensuring continuity of cancer treatment despite the COVID-19 epidemic]. / Assurer la continuité des traitements anticancéreux malgré l'épidémie de Covid-19.

A real organisational challenge for the teams working alongside people being treated for cancer, the continuity of treatment and care has mobilised all those involved in care since the beginning of the COVID-19 epidemic. To ensure the safety of these patients, who are more vulnerable due to their illness, and to ensure that they do not lose any chances against their cancer, the care providers of the Lyon Regional Cancer Centre have innovated and adapted their practices, both in the city and in the hospital.

[Organisation of cancer care during the COVID-19 pandemic : experience from CHU Liège]. / Organisation des soins en cancérologie dans le contexte de la COVID-19 : expérience au CHU de Liège.

The COVID-19 pandemic has had a major impact in the world of Oncology. Surprised by the rapidity of the extension of the pandemic, the oncological department had to be reorganised in a very short time period in a hospital which had the primary objective to treat infected patients. The author describes how with the help of an international network and local research projects all efforts have been done to offer the best patient's care in a secure environment.

La pandémie de la COVID-19 a eu un impact majeur sur l'organisation des soins en Oncologie. Surpris par la rapidité des événements, il fallait redéfinir en urgence le fonctionnement d'un service d'Oncologie médicale dans un hôpital qui devait, en priorité, s'occuper de la prise en charge des patients infectés par le SARS-CoV-2. L'auteur décrit comment, avec l'aide d'un réseau international et de projets scientifiques locaux, tous les efforts ont été réalisés pour assurer la continuité des soins dans les meilleures conditions de sécurité du patient.

European Cancer Organisation Essential Requirements for Quality Cancer Care (ERQCC): Lung cancer.

European Cancer Organisation Essential Requirements for Quality Cancer Care (ERQCC) are written by experts representing all disciplines involved in cancer care in Europe. They give patients, health professionals, managers and policymakers a guide to essential care throughout the patient journey. Lung cancer is the leading cause of cancer mortality and has a wide variation in treatment and outcomes in Europe. It is a major healthcare burden and has complex diagnosis and treatment challenges. Care must only be carried out in lung cancer units or centres that have a core multidisciplinary team (MDT) and an extended team of health professionals detailed here. Such units are far from universal in European countries. To meet European aspirations for comprehensive cancer control, healthcare organisations must consider the requirements in this paper, paying particular attention to multidisciplinarity and patient-centred pathways from diagnosis, to treatment, to survivorship.

[Childhood cancer in part of France: Key issues and organization of care in Corsica island]. / État des lieux des maladies onco-hématologiques pédiatriques en Corse et organisation des soins.

INTRODUCTION: In France, the management of pediatric cancers is carried out in reference hospitals that can delegate care to local health centres (LHC), forming "care networks". There is no LHC in Corsica, forcing children and their families to leave the island for all care in the reference centre. The aim of this study was to describe the situation in Corsica and to consider this organisation. METHODS: This is a descriptive preliminary study based on databases from the National Childhood Cancer Registry, "RHeOP" network and a patient questionnaire. We included over a period of 10 years all children with onco-hematological disease who resided in Corsica. RESULTS: The incidence of pediatric cancers since 2005 ranged from 5 to 12 new cases per year. The hospital centre of Timone (Marseille) was the reference centre for 73% of patients, followed by Nice University Hospital for 14%. Almost all the parents interviewed (90%) were in favour of creating an LHC and all of them highlighted many difficulties that, according to them, could be improved by the presence of a LHC in Corsica (organisation of travel, delay and distance from home…). However, there currently appears to be a lack of training for medical and paramedical staff to provide quality second-line care. CONCLUSION: The rates of pediatric onco-hematological diseases in Corsica may warrant the creation of an LHC on the island. Additional cost studies on the feasibility of an LHC in Corsica are needed to optimise the care and quality of life of these children and their families.

'You have got to stick to your times': Care workers and managers' experiences of working in extra care housing.

Extra care housing (ECH) has been lauded as an innovative model of housing with care for older people that promotes and supports independent living. The study used a qualitative design to explore how care is delivered in four extra care settings in England over 20 months during 2016-2017. This paper reports findings from semi-structured interviews with 20 care workers and seven managers. The article argues that, despite being heralded as a new model, care workers in ECH face similar organisational pressures as those working in more conventional settings and, in turn, the care which they are able to provide to residents mimics traditional forms of care.

Strengths and weaknesses of the acute care systems in the United Kingdom and the Netherlands: what can we learn from each other?

BACKGROUND: The demand on Emergency Departments and acute medical services is increasing internationally, creating pressure on health systems and negatively influencing the quality of delivered care. Visible consequences of the increased demand on acute services is crowding and queuing. This manifests as delays in the Emergency Departments, adverse clinical outcomes and poor patient experience. OVERVIEW: Despite the similarities in the UK's and Dutch health care systems, such as universal health coverage, there are differences in the number of patients presenting at the Emergency Departments and the burden of crowding between these countries. Given the similarities in funding, this paper explores the similarities and differences in the organisational structure of acute care in the UK and the Netherlands. In the Netherlands, less patients are seen at the ED than in England and the admission rate is higher. GPs and so-called GP-posts serve 24/7 as gatekeepers in acute care, but EDs are heterogeneously organised. In the UK, the acute care system has a number of different access points and the accessibility of GPs seems to be suboptimal. Acute ambulatory care may relieve the pressure from EDs and Acute Medical Units. In both countries the ageing population leads to a changing case mix at the ED with an increased amount of multimorbid patients with polypharmacy, requiring generalistic and multidisciplinary care. CONCLUSION: The acute and emergency care in the Netherlands and the UK face similar challenges. We believe that each system has strengths that the other can learn from. The Netherlands may benefit from an acute ambulatory care system and the UK by optimizing the accessibility of GPs 24/7 and improving signposting for urgent care services. In both countries the changing case mix at the ED needs doctors who are superspecialists instead of subspecialists. Finally, to improve the organisation of health care, doctors need to be visible medical leaders and participate in the organisation of care.

Staffing, activities, and infrastructure in 96 specialised adult congenital heart disease clinics in Europe.

BACKGROUND: Clinical guidelines emphasise the need for specialised adult congenital heart disease (ACHD) programmes. In 2014, the working group on Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC) published recommendations on the organisation of specialised care for ACHD. To appraise the extent to which these recommendations were being implemented throughout Europe, we assessed the number of patients in active follow-up and available staff resources in European ACHD programmes. METHODS: We conducted a descriptive, cross-sectional, paper-based survey of specialised ACHD centres in Europe in late 2017 concerning their centre status in 2016. Data from 96 ACHD centres were analysed. We categorised ACHD programmes into seven different centre types based on their staff resources and composition of interdisciplinary teams. RESULTS: Only four centres fulfilled all medical and non-medical staffing requirements of the ESC recommendations. Although 60% of the centres offered all forms of medical care, they had incomplete non-medical resources (i.e., specialised nurses, social workers, or psychologists). The participating centres had 226,506 ACHD patients in active follow-up, with a median of 1500 patients per centre (IQR: 800-3400). Six per cent of the patients were followed up in a centre that lacked a CHD surgeon or congenital interventional cardiologist. CONCLUSIONS: A minority of European ACHD centres have the full recommended staff resources available. This suggests that as of 2016 either ACHD care in Europe was still not optimally organised, or that the latest ESC recommendations were not fully implemented in clinical practice.

[Assessing the contribution of the advanced practice nurse]. / Évaluer la contribution de l'infirmier en pratique avancée.

An assessment of the impact of advanced practice will be presented to the French parliament in 2021. Advanced practice nurses must make use of this opportunity. Indeed, this assessment is likely to come with major challenges in terms of the reorganisation of the healthcare provision following the implementation of this new function. The definition of adapted indicators is essential.

Does pooling health & social care budgets reduce hospital use and lower costs?

An increasing burden of chronic disease and multimorbidity has prompted experimentation with new models of care delivery that aim to improve integration across sectors and reduce overall costs through decreased use of secondary care. One approach to stimulate this change is to pool health and social care budgets to incentivise care delivery in the most efficient location. The Better Care Fund is a large pooled funding initiative gradually taken up by local areas in England between 2014 and 2015. We exploit this variation in timing of uptake to examine the short- (1 year) and intermediate-term (up to 2 years) effects of the Better Care Fund on seven measures of hospital use and costs from a cohort of 14.4 million patients constructed using national Hospital Episode Statistics. We test for differential effects on people with multimorbidity. We find no effects of budget pooling on secondary care use for the whole population. For multimorbid patients the use of bed days increased in the short-term by 0.164 (4.9%) per patient per year. In the short-to intermediate-term, pooling health and social care budgets does not reduce hospital use nor costs. However, pooling funds does appear to stimulate additional integration activity.