Qualitative Study to Inform Social Context-Informed Treatment of Children With Obesity.

Older prisoners are the fastest growing group in prisons. They have complex health and social care needs and the coordination of their care is suboptimal. An action learning group including health care staff, prison staff and older prisoners was established at one prison in England. The group developed the Older prisoner Health and Social Care Assessment and Plan (OHSCAP) which is a health and social care assessment and care planning process for the better identification and management of older prisoners’ needs. This paper describes and critically analyses the process of action learning in prison to develop and pilot the OHSCAP. Data were collected through reflective notes from the action learning group facilitator, reflective diary writing from group members, emails, research project steering group meeting notes and interviews with action learning group members. The constant comparison method of data analysis was used. We found that action learning is a valuable approach for developing practice in the challenging prison environment. There are important considerations when using action learning in the prison setting. These include maintaining the groups’ focus; clarifying roles and procedures; providing practical and theoretical space and considering the groups’ composition.

BackgroundOlder prisoners are the fastest growing subgroup in the English and Welsh prison estate. Existing research highlights that older prisoners have high health and social care needs and that, currently, these needs routinely remain unmet.Objectives(1) To explore the needs of men entering and leaving prison; (2) to describe current provision of services, including integration between health and social care services; and (3) to develop and pilot an intervention for identifying health and social care needs on reception into prison, ensuring that these are systematically addressed during custody.MethodsThe research programme was a mixed-methods study comprising four parts: (1) a study of all prisons in England and Wales housing older adult men, establishing current availability and degree of integration between health and social care services through a national survey and qualitative interviews; (2) establishing the health and social care needs of older men entering prison, including experiences of reception into custody, through structured (n = 100) and semistructured (n = 27) interviews; (3) the development and implementation of an intervention to identify and manage the health, social care and custodial needs of older men entering prison; and (4) exploration of the health and social care needs of older men released from prison into the community through qualitative interviews with older prisoners prior to and following discharge from prison. Descriptive statistics were produced for all quantitative data, and qualitative data were analysed using the constant comparison method.ResultsThe number of older prisoner leads has increased in recent years but they do not all appear always to be active in their roles, nor in receipt of specialist training. Nearly half (44%) of establishments do not have an older prisoner policy. There is a lack of integration between health and social care services because of ambiguity regarding responsibility for older prisoners' social care. The responsible social service may be located a considerable distance from where the prisoner is held; in such instances, local social services do not co-ordinate their care. The most frequent unmet need on prison entry was the provision of information about care and treatment. Release planning for older prisoners was frequently non-existent.LimitationsThe study used a cut-off age of 60 years as the lower limit for the definition of an older prisoner; evidence has emerged that supports a redefinition of that cut-off to 50 years. Our study examined the care provided for men and this should be considered if contemplating using the Older prisoner Health and Social Care Assessment and Plan (OHSCAP) with older women in prison.ConclusionThe OHSCAP, developed as part of this study, provided a feasible and acceptable means of identifying and systematically addressing older prisoners' health and social care needs. Future work will include the conduct of a randomised controlled trial to examine the impact of the OHSCAP in terms of improving a range of outcomes, including economic impact.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

In my last column I discussed the lack of detail or meaningful change in the government’s Build Back Better plan for health and social care in England.12 I did not,...

Purpose – In this paper, the Scottish Government's approach to improving outcomes for patients and service users by integrating health and social care planning and provision is described. The Scottish Parliament passed primary legislation in February 2014, which places requirements on Health Boards and Local Authorities to work together more closely than ever before. The paper aims to discuss these issues. Design/methodology/approach – This paper sets out the Scottish Government's legislative approach to integrating health and social care, based on previous experience of encouraging better partnership between health and social care working without legislative compulsion. Findings – The Scottish Government has concluded that legislation is required to create the integrated environment necessary for health and social care provision to meet the changing needs of Scotland's ageing population. Research limitations/implications – The paper is confined to experience in Scotland. Practical implications – Legislation is now complete, and implementation of the new arrangements is starting. Evaluation of their impact will be ongoing. Social implications – The new integrated arrangements in Scotland are intended to achieve a significant shift in the balance of care in favour of community-based support rather than institutional care in hospitals and care homes. Its social implications will be to support greater wellbeing, particularly for people with multimorbidities within communities. Originality/value – Scotland is taking a unique approach to integrating health and social care, focusing on legislative duties on Health Boards and Local Authorities to work together, rather than focusing on structural change alone. The scale of planned integration is also significant, with planning for, at least, all of adult social care and primary health care, and a proportion of acute hospital care, included in the new integrated arrangements.

Introduction: The Healthcare System in Catalonia is a public integrated network with >30 information systems IS. In 2008, Catalonia Shared Electronic Health Record HC31was launched up to allow interoperability among different healthcare providers. The Social care System is organised on two levels: the basic social service, under responsibility of the local authorities, and the specialised social, mostly under regional responsibility. Although Social Service Act of 2017 foresaw the creation of a single Social Record, this has not yet been developed. There are therefore different coexisting IS: Nursing Homes, residential care, daily care facilities for elderly etc. Regarding Catalan Integrated health and social care Plan, interoperability between social services care records and HC3 was prioritized . Short description of practice change implemented: In 2017, a pilot project has started with the basic social services area of Barcelona Council with HC3. Data exchange between Social Services of Barcelona Council and Health Services in Catalonia is now a reality. A professionals’ committee health and social defined the minimum data set to which health and social professionals could have access which will be progressively widened to other territories. Aim and theory of change: The main aims2 to integrate both care systems: To disseminate information among both care systems in an Integrated care environment3. Interoperability with the main local government IS. Connection to central repositories of DW with information on dependent and disabled people that has been formally assessed and recognized by the DW to HC3. Integrate the public owned residential care and nursing homes to HC3. To facilitate HC3 access to teams assessing condition of dependency and disability. Targeted population and stakeholders People in the Region. Timeline: Systems piloted and operational in Barcelona. 80% of Catalan territories will be exchanging data by the end of 2018. Highlights: It will allow exchange of health and social information of citizens in Catalonia who require the use of the system in an Integrated Care environment Comments on sustainability: Each municipality will bear the integration and maintenance cost of the platform and will be supported by HC3. Comments on transferability: Experiences and lessons learnt in terms of legal, technical and functional issues will be made available to other areas of social care records in Catalonia and other EU regions. Conclusions: The completed first phase Barcelona project gave us a lot of knowledge and experience, which will aid in the quick deployment of the project in the Catalonian Region. It will also help increase the cross-platform information exchange and the number of municipal social care services. Discussions: First phase had great impact to establish solid base and make the model sustainable. A common Identification Number has been established by the Catalan government this year facilitating current and future interoperability scenarios related to information sharing and required in implementation of an Integrated Health and Social care Plan4. Lessons learned: Interdepartmental project means that we have to work collaboratively and highly coordinated, emphasizing being respectful in the state of each department, even when there are differences in technological and structural capacity.

Summary This paper describes counselling in a social work agency that provides hostel accommodation for single homeless women, and works to resettle them into permanent accommodation. Given that the Barclay Report described the practice of social work as made up of the two elements of counselling and social care planning, the paper explores the way counselling is influenced when carried on in an agency with a specific ‘social care’ function. This is contrasted with counselling in agencies that offer a counselling service alone. Examples will be given of people using an attachment to a hostel, and to a worker, as they cope with change and make psychological growth. The power of such workers can only be exercised if they are true to the agency function, and gear their interventions to the task of resettlement. If workers do this they may find that as well as resettling people into accommodation, they are resettling them into life.

Numerous ageing adults need to provide care for older and/or younger generations while also facing life challenges associated with the transition to old age. However, no systematic investigation has examined aging sandwich carers’ future care planning, nor the impacts of intergenerational care provision on their care planning. A purposive sample of 120 individuals from 40 multigenerational families in Hong Kong was recruited through various channels. The families all filled the following inclusion criteria: (a) had at least one adult aged 50–69 years with both surviving parents and children, (b) all three generations were willing to participate, and (c) the participants spoke Chinese and lived in Hong Kong. For each eligible family, an older parent from the oldest generation, an adult from the sandwiched, and a child from the youngest generation were interviewed separately. Both inductive and deductive coding approaches were used for data analysis. The findings reveal that lifelong multigenerational care transfer and intergenerational relationships shaped the future care planning and preparation processes and experiences. The upward care provision and substantial investment in child-rearing often lead to delayed and indirect reciprocity expectations from the sandwich generation. Moreover, the experience of caring for aging parents prompts sandwich generation to make financial, health, and social life-related care plans. However, traditional family communication patterns often obstruct open discussions about care plans between sandwich generation and their children. Anticipated future circumstances of both aging parents and children further shape the intended care arrangements of the sandwich generation.

The policy imperative to increase public participation in health and social care research, planning and service delivery raises significant questions about optimum approaches, methods and the extent to which this policy can influence change in practice. This paper highlights the key policy literature on user involvement and participatory research methods to establish the context for a partnership research project exploring perceptions of risk in relation to falls from the perspectives of older people, carers, and health and social care professionals. The paper reports the methods used in developing user involvement in the research at a number of levels, including project management, and a consumer panel working alongside the research team and influencing the dissemination in local falls prevention strategies. The authors draw out the issues related to the context and method of involvement, and discuss the impact on research quality and local service development in health and social care.

BackgroundMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. Attempts to estimate the burden of disease have been limited by selection bias, and by lack of diagnostic biomarkers and of agreed reproducible case definitions. We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research.MethodsWe compared the clinical presentation, prevalence and incidence of ME/CFS based on a sample of 143,000 individuals aged 18 to 64 years, covered by primary care services in three regions of England. Case ascertainment involved: 1) electronic search for chronic fatigue cases; 2) direct questioning of general practitioners (GPs) on cases not previously identified by the search; and 3) clinical review of identified cases according to CDC-1994, Canadian and Epidemiological Case (ECD) Definitions. This enabled the identification of cases with high validity.ResultsThe estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. The overall estimated minimal yearly incidence was 0.015%. The highest rates were found in London and the lowest in East Yorkshire. All but one of the cases conforming to the Canadian criteria also met the CDC-1994 criteria, however presented higher prevalence and severity of symptoms.ConclusionsME/CFS is not uncommon in England and represents a significant burden to patients and society. The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care. We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants. This combination if used systematically will enable international comparisons, minimization of bias, and the identification and investigation of distinct sub-groups of patients with possibly distinct aetiologies and pathophysiologies, standing a better chance of translation into effective specific treatments.

The strategic allocation of resources is one the most difficult tasks facing health and social care decision makers, with multiple organisations delivering complex services to heterogeneous populations. The enduring appeal of the balance of care approach, a systematic framework for exploring the potential costs and consequences of changing the mix of community and institutional services in a defined geographical area, is thus unsurprising. However, no attempt has previously been made to synthesise or appraise the methodological approaches employed and lessons to inform future applications may go unheard. This paper seeks to address those concerns by reporting the findings of a systematic literature review that identified 33 examples of the model's use spanning 40 years. The majority of studies were undertaken in the UK and explored the services needed by frail older people. There is, however, nothing in the model to restrict it to this context. The paper also details the different ways key elements of the model (information about clients, resources, the appraisal of settings, costs and outcomes) have been operationalised, and considers their strengths and weaknesses. Whilst several studies identified a potential to reduce costs via the use of less institutional care, not all applications predicted cost savings.

In North Carolina, ∼5% or 57 000 children enrolled in Medicaid have complex medical conditions and account for >50% of the Medicaid dollars spent each year on the medical care of children. In 2012, Community Care of North Carolina (CCNC) received a Center for Medicare and Medicaid Innovations grant to establish the North Carolina Child Health Accountable Care Collaborative (CHACC) to address the health care needs of these children. Care coordination is an integral part of health reform activities, including many Medicare programs. CHACC appears to use a unique approach of targeting higher-cost pediatric Medicaid patients and placing specialty care managers in tertiary children's services.1,2 CCNC serves North Carolina Medicaid beneficiaries through a statewide, community-based public–private partnership, providing care through medical homes using population management approaches to improve care and contain costs.3 CHACC encourages medical and other health professionals to improve quality and cost-effectiveness of care for children on Medicaid with complex medical conditions. A primary goal of CHACC is to ensure that every child with a complex illness has a medical home in the community where he or she lives and receives coordinated primary and subspecialty care to reduce care fragmentation and cost. One target is reduction of unnecessary emergency department visits and hospitalizations. Although hospital revenues will be affected, hospitals will be better positioned to compete in the value-based care environment.4 CHACC patients are all North Carolina Medicaid beneficiaries enrolled in CCNC for care, allowing seamless identification and clinical information exchange by CHACC staff who are CCNC employees.Historically, CCNC has focused on primary care; however, CHACC bridges subspecialty and hospital-based care at 13 North Carolina hospitals with tertiary children's services with embedded care coordinators. The care coordinators are nurses or social workers with pediatric clinical experience. Their activities include completion of a comprehensive assessment of patient and family needs, care plan development, referrals to community services, patient and caretaker education, and collaboration with providers and caregivers to facilitate transitions in care. They provide a "warm handoff" to the community-based CCNC care coordinators in primary care practices and serve as dedicated links between the subspecialist team and primary care professionals. Care plans for these children are posted on a secure CCNC web-based provider portal, giving primary care professionals a centralized site to review and download care plans and to communicate with the community-based and tertiary care coordinators and subspecialists. The care plans have been well received by the community-based physicians caring for these children, reducing the communication burden of caretakers as intermediaries. A family satisfaction survey is being used to gain insight into caretaker perspectives. As one of the participating pediatric surgeons said, "This [CHACC program] is what I have been waiting for. With the care plan, I had everything I needed to care for the child in front of me. It is better than our brand new EHR!"Identifying the target population for CHACC enrollment is a continuing challenge. Nationally accepted tools for predictive models to identify children with complex medical conditions whose care may be "impactable" (quality improvement and cost reduction) have not been developed. To address this gap, North Carolina Medicaid claim data were used to help identify patient populations who may benefit from the program. In parallel, claim data for CHACC-enrolled children are being collected to determine impact on Medicaid costs, initially comparing CHACC patients with historical groups of similar patients. Advanced analytics are being developed to create predictive models to identify "impactable" patients early in their course, providing the opportunity for care managers to improve quality of care, comanagement, and cost reduction. To date, >1500 patients have been enrolled in CHACC in the first 6 months of the program. Collaborative learning is a key part of CHACC. At the 5 academic centers, work is under way to develop approaches for transitioning care to medical homes in the community using comanagement partnerships with subspecialists. For example, in a 29-county area of eastern North Carolina, the Department of Pediatrics at East Carolina University established the Center for Children with Complex and Chronic Conditions (C5) in 2008. From 2008 to 2010, C5 enrolled 234 children with complex conditions (eg, tracheostomies, gastrostomy tubes, ventilators, feeding pumps, cerebral palsy, intellectual disabilities, complex genetic syndromes) and began coordinating inpatient and outpatient care of these children. CHACC is aiding C5 with additional care managers and new communication links with primary care physicians. So far, C5 staff have documented a 20% reduction in average inpatient length of stay for ventilator-dependent patients, a 36% reduction in readmissions during the first month after discharge, a 26% reduction in readmissions during the first year after initial discharge, a 55% reduction in overall rehospitalizations, and an 11% reduction in emergency department visits. The calculated savings total for 2008 to 2010 is >$6 million.5 To continue this program, care coordination is necessary to support these children in the community. Also, residents, primary care physicians, and parents need more education about the patient's care.To address issues of access to subspecialists across North Carolina, CHACC is developing concise guidelines to aid primary care providers in the care of children with common pediatric conditions often referred prematurely or unnecessarily to pediatric subspecialists. CHACC guidelines are developed in joint day-long work groups of pediatric subspecialists from North Carolina academic medical centers and community primary care physicians. The work group reviews evidence-based data, published guidelines, and, where conclusive data are not available, consensus of subspecialists and primary care physicians on guideline content. A subgroup writes a draft guideline, sharing it for review with subspecialists and generalists across the state. The final guideline is published on the CCNC Web site (https://www.communitycarenc.org/emerging-initiatives/child-health-accountable-care-collaborative/chacc-gi/). Guidelines include consensus recommendations for appropriate primary care clinical evaluation, including laboratory, imaging, management guidance, "red flag" guidelines for immediate referral, and patient and family educational material. Final guidelines include endorsement from the subspecialty groups at all 5 North Carolina academic medical centers. The CHACC steering committee works with the North Carolina chapter of the American Academy of Pediatrics and the CCNC networks across the state to educate primary care health professionals about the guidelines and to encourage their use. Guidelines for constipation, gastroesophageal reflux, and chronic abdominal pain are available, and a guideline for headaches is in draft review.Informal feedback from primary care providers describes the guidelines as easy to download in a busy primary care practice and useful for patient care and family education. It is expected that this tool will aid in convincing families and patients to continue care in the primary care setting unless patients manifest "red flag" symptoms or meet referral guidelines. More formal evaluation of the impact of these guidelines on subspecialty access is under way.CHACC appears to create a unique, care management–based, statewide engagement of pediatric subspecialists and general pediatricians and primary care providers for developing comanagement protocols for children with complex conditions and promoting coordinated, efficient, high-quality, and cost-effective care. As medical providers in North Carolina engage in payment reform transition, including risk-based contracting, CHACC provides a platform to evaluate high-cost medical care for children. We anticipate that the cost savings from CHACC will be useful in justifying continuation of the program after completion of the grant-funded work and will be a stepping stone to value-based care for children in North Carolina Medicaid and adults with high-cost chronic illness moving between levels of care.Our work leads us to call for more development of tools for predictive analysis and risk adjustment for medically complex children, and we are pleased to see others working in this area.6 More work is needed in subspecialty referral management using tools such as the CHACC guidelines. We believe the medically complex child and the structure of the health care delivery system for these children reinforces the old saying, "Children are not just little adults."7Elizabeth Cuervo Tilson, MD, carried out the initial review of the manuscript and provided revisions to the original document.

<h3>Objective:</h3> To assess FTLD epidemiology across Europe. The FRONTotemporal dementia Incidence European Research Study (FRONTIERS) was established for this purpose. <h3>Background:</h3> Diagnostic incidence data for syndromes associated with Frontotemporal Lobar Degeneration (FTLD) in multinational studies is urgent in light of upcoming therapeutic approaches. <h3>Design/Methods:</h3> Retrospective population-based study conducted from June 1^st, 2018 to May 31^st, 2019 in thirteen tertiary FTLD research clinics from the UK, Netherlands, Finland, Sweden, Spain, Bulgaria, Serbia, Germany, and Italy. All new FTLD-associated cases (hereafter: incident FTLD) during the study period were counted, with a combined catchment population of over 11,000,000 person-years. Random intercept Poisson models were used to obtain estimates of the European FTLD incidence rate accounting for geographic heterogeneity. <h3>Results:</h3> Based on 267 identified cases (mean age±standard deviation=66.7±9.02; female=41.6%), the annual incidence rate for FTLD in Europe was 2.36 per 100,000 person-years (95% Confidence Intervals [CI]=1.59–3.51). There was a progressive increase in FTLD incidence across age, reaching its peak at the age of 71. Overall, the incidence was higher among men (2.84 per 100,000 person-years; 95% CI=1.88–4.27) than among women (1.91 per 100,000 person-years; 95% CI=1.26–2.91). Behavioural variant frontotemporal dementia was the most common phenotype (40.07%), followed by primary progressive aphasia (28.46%) and extrapyramidal phenotypes (25.84%). Frontotemporal dementia with amyotrophic lateral sclerosis was the rarest phenotype (5.62%). Almost 35% of FTLD patients presented a family history of dementia. The estimated number of new FTLD cases in Europe is approximately 12,000 people per year. <h3>Conclusions:</h3> FTLD-associated syndromes are more common than previously recognized, and diagnosis should be considered at any age. Improved knowledge of FTLD epidemiology may contribute to appropriate health and social care planning, and in the design of future clinical trials. <b>Disclosure:</b> Dr. Logroscino has nothing to disclose. Marco Piccininni has received research support from Center for Stroke Research Berlin (private donations). Caroline Graff has nothing to disclose. Dr. Hardiman has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Wave Pharmaceuticals. Dr. Hardiman has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cytokinetics . Dr. Hardiman has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Hardiman has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Taylor and Francis. The institution of Dr. Hardiman has received research support from Science Foundation Ireland. The institution of Dr. Hardiman has received research support from HRB. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Ludolph has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen . Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche Pharma AG . Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Pharma. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biologix FZCo.. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biologix FZCo.. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biologix FZCo.. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biogen. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biogen. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biogen. Dr. Ludolph has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Teva. The institution of Dr. Moreno has received research support from Instituto de Salud Carlos III. The institution of Dr. Moreno has received research support from Tau Consortium. Markus Otto has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Markus Otto has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Axon Neuroscience. Markus Otto has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Markus Otto has a non-compensated relationship as a Sponor of research with Federal ministry of education and research that is relevant to AAN interests or activities. Anne Remes has nothing to disclose. James Rowe, BA BM BCh PhD has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. James Rowe, BA BM BCh PhD has received personal compensation in the range of $500-$4,999 for serving as a Consultant for SV Health. James Rowe, BA BM BCh PhD has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Astex. James Rowe, BA BM BCh PhD has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Asceneuron. James Rowe, BA BM BCh PhD has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for GE Healthcare. The institution of James Rowe, BA BM BCh PhD has received research support from Janssen. The institution of James Rowe, BA BM BCh PhD has received research support from Lilly. The institution of James Rowe, BA BM BCh PhD has received research support from AZ Medimmune. James Rowe, BA BM BCh PhD has received publishing royalties from a publication relating to health care. Harro Seelaar, MD, PhD has nothing to disclose. Dr. Solje has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Roche Diagnostics. Dr. Solje has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Solje has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Lundbeck. Dr. Solje has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Roche. Dr. Solje has received research support from Instrumentarium Science Foundation. Dr. Solje has received research support from The Finnish Brain Foundation. Dr. Solje has received research support from Orion Research Foundation. The institution of Dr. Solje has received research support from Sigrid Juselius Foundation. The institution of Dr. Solje has received research support from Finnish Medical Foundation. The institution of Dr. Solje has received research support from EU-JPND. The institution of Dr. Solje has received research support from Orion Corpporation. Elka Stefanova has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for ACTAVIS d.o.o. Elka Stefanova has received personal compensation in the range of $0-$499 for serving on a Speakers Bureau for Krka d.o.o.. The institution of Elka Stefanova has received research support from Alzheimer Association. Elka Stefanova has a non-compensated relationship as a lecturing on EAN autumn school with EAN that is relevant to AAN interests or activities. Latchezar Traykov has nothing to disclose. Vesna Jelic has nothing to disclose. Melissa Thaeri Rydell has nothing to disclose. Niall Pender has nothing to disclose. Sarah Anderl-Straub has nothing to disclose. Myriam Barandiaran has nothing to disclose. Alazne Gabilondo Lopez, MD has nothing to disclose. Suvi-Johanna Kruger has nothing to disclose. Dr. Murley has nothing to disclose. An immediate family member of Timothy Rittman has received personal compensation for serving as an employee of Crossref. An immediate family member of Timothy Rittman has received personal compensation for serving as an employee of MDPI. Timothy Rittman has received personal compensation in the range of $5,000-$9,999 for serving as a Study clinician with Oxford Biomedica. Timothy Rittman has received personal compensation in the range of $0-$499 for serving as a Reviewer with National Institute for Health and Clinical Excellence. Emma L van der Ende has nothing to disclose. Dr. Van Swieten has nothing to disclose. Paivi Hartikainen, MD has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Paivi Hartikainen, MD has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Bristol Myers Squibb. Paivi Hartikainen, MD has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Paivi Hartikainen, MD has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. Paivi Hartikainen, MD has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Gorana Mandic-Stojmenovic has nothing to disclose. Shima Meherabian has nothing to disclose. Luisa Benussi has nothing to disclose. Antonella Alberici has nothing to disclose. Maria Teresa Dell'Abate has nothing to disclose. The institution of Dr. Zecca has received research support from Ente Ospedaliero Cantonale. Barbara Borroni has nothing to disclose.

BackgroundFrailty is a common clinical syndrome in ageing population that carries an increased risk for adverse health outcomes including falls, hospitalization, disability, and mortality. As these outcomes affect the health and social care planning, during the last years there is a tendency of investing in monitoring and preventing strategies. Although a number of electronic health record (EHR) systems have been developed, including personalized virtual patient models, there are limited ageing population oriented systems.MethodsWe exploit the openEHR framework for the representation of frailty in ageing population in order to attain semantic interoperability, and we present the methodology for adoption or development of archetypes. We also propose a framework for a one-to-one mapping between openEHR archetypes and a column-family NoSQL database (HBase) aiming at the integration of existing and newly developed archetypes into it.ResultsThe requirement analysis of our study resulted in the definition of 22 coherent and clinically meaningful parameters for the description of frailty in older adults. The implemented openEHR methodology led to the direct use of 22 archetypes, the modification and reuse of two archetypes, and the development of 28 new archetypes. Additionally, the mapping procedure led to two different HBase tables for the storage of the data.ConclusionsIn this work, an openEHR-based virtual patient model has been designed and integrated into an HBase storage system, exploiting the advantages of the underlying technologies. This framework can serve as a base for the development of a decision support system using the openEHR’s Guideline Definition Language in the future.

How decisions are made and communication is handled are essential to ensuring a good outcome.In the case of Scardoni v Hawryluck,1 Mrs H was an 81-year-old woman with advanced Alzheimer disease, cardiovascular illness, and septic shock whose family and physician could not agree on goals for care, requiring that a legal decision be made regarding the level of care to be provided. Over time and after much discussion, the multidisciplinary team on the intensive care unit (ICU) reached a consensus that intensive care for Mrs H would not improve her condition. So it was decided that after Mrs H was stepped down to a general medical unit, should an infection or respiratory distress develop, she would not be returned to the ICU. The attending ICU physician informed the family that instead of ICU care, “the hospital would offer her palliative care: painkillers and sedatives to keep her comfortable while her afflictions took their course.”2 In this particular case, the patient’s family challenged the health care team’s recommendations and insisted that their mother be readmitted to the ICU so that aggressive life-sustaining treatment would continue.This case, although Canadian, is relevant to ICU settings throughout North America. The purpose of this discussion is not to provide an in-depth ethical analysis, but rather to use the case of Mrs H to characterize one type of health care situation that clinical ethicists could help facilitate. Medical recommendations such as those involved in the care of Mrs H are made to prevent the “revolving door” patient, who according to ICU teams will receive no medical benefit if returned to the ICU. Decisions not to readmit are euphemistically referred to by some ICU staff as the “one-way ticket out of ICU” or “celestial transfer.” Such language shared between colleagues reflects a coping strategy, a “gallows humor,” intended to manage difficult feelings like sadness, anger, grief, sympathy, or moral distress. Cases like that of Mrs H are of particular concern to critical care nursing. Research has indicated that moral distress, a significant contributing factor to burnout, is encountered by ICU nurses when the care they are providing to a patient is regarded as futile.3It is not uncommon for hospital-based clinical ethicists to receive a request for consultation when disputes regarding similar recommendations for care arise between substitute decision makers and the ICU treatment team. These cases can lead to moral distress because of commonly held opinions among team members that futile treatment is being provided. Although staff can provide many life-sustaining treatments to such a patient, ethical questions often arise during the patient’s stay in the ICU. What ought to happen when an ICU team decides that a patient should be transferred to a general medical unit to receive comfort measures only, with no readmission to the ICU? Although teams discuss the practical questions about what can be done, the ethical questions about what ought to be done are sometimes not as clear. The following discussion explores how clinical ethicists can provide valuable assistance with the kinds of ethical challenges these situations customarily present. Particular emphasis will be placed on working within a process-driven, interdisciplinary framework that maintains a communication-oriented approach to ethical decision making.Clinical ethics is a relatively new field, and the role and purpose of clinical ethicists can vary somewhat according to the particular health care setting. For the purpose of this discussion, the authors describe the knowledge, skills, and activities of clinical ethicists through their review of relevant literature as well as their own training and experiences as staff clinical ethicists at 2 acute care settings in Ontario, Canada.Greater legal clarity or legislative measures to specifically address conflicts that arise over withdrawal or withholding of treatment for terminally ill patients are required, according to at least one legal expert. Current Canadian law, according to this same scholar, leaves doctors, patients and their families in a “grey zone” as to who should have ultimate authority on such decisions.4 The daily reality in most North American ICUs is that this gray zone persists—for better or worse. Although hospitals attempt to provide guidelines for addressing conflicts such as the one involving Mrs H, it is the quality of communication and relationship within the interdisciplinary team and between the treating team and the patient’s family that has a marked influence on decision making.5–7 In most cases similar to this one, consensus about level of care is first achieved by the interdisciplinary team, and a subsequent agreement is reached between the treatment team and the patient’s substitute decision maker and family. However, when agreement cannot be reached because of irreconcilable notions pertaining to what constitutes benefit to the patient and what constitutes harm, the results can be uncertain, stressful, and most unsatisfactory for both the health professionals involved and the patient’s family. This combination of an unfortunate turn of events for the patient, sharing of bad news with family members, and the recommendation for care outside of the ICU is a juncture of decision making at which conflict can occur and ethical challenges are most apparent to members of the interdisciplinary team.8,9Much has been written about the difficulties in communication within the ICU and how this affects patient care. Considerable evidence indicates that communication between the ICU team, patients, and patients’ families can be inadequate, leading to conflict and a possible long-term effect on the patient’s family.6,8,10,11 In one study,8 46% of families who had a loved one die in the ICU reported conflict over decisions to withdraw or withhold life-support measures. These family members also reported conflict over the manner in which staff communicated with or behaved toward them. The authors of that study8 cited family members who felt pressured by staff to “hasten their loved one’s death because they placed a burden on valued resources.” The importance of communication between treatment teams and patients and patients’ families cannot be overstated. In addressing the difficulties and deficiencies that have been identified, 2 experts concluded, “communication with caregivers is consistently identified as the most important and least achieved factor in patient/family satisfaction surveys.”12Intensive care is primarily intended to provide maximum benefit to those patients who are likely to recover from their infirmity or trauma.13 When the interdisciplinary team is not clearly communicating ethical considerations as well as the criteria they are using to determine the effectiveness or success of the treatment plan, patients’ families may develop erroneous expectations that life-sustaining interventions will continue to be offered.6 At the same time as a loved one is receiving ICU care with a grim prognosis, families are struggling to come to terms with impending loss. Family functioning or experience in coping with loss,14 unrealistic expectations regarding health outcome, within a societal context of diverse religious or cultural beliefs, can markedly influence families’ decision making about end-of-life care. Such formidable contributing factors further emphasize that effective communication strategies, as well as an appropriate level of sensitivity, ought to be used in ICUs when dealing with patients’ families.11Team communication, in particular communication between disciplines, also has proven problematic in decisions about end-of-life care in the ICU. Critical care nurses have cited difficulties in communication and decision making within interdisciplinary ICU teams. Ferrand et al15 reported that 75% of the nursing staff who participated believed that “collaboration was inadequate during decision making” despite general agreement that such team collaboration is necessary and desired. In another study,16 about one-third of the ICU nurses who participated felt “excluded by physicians from patient care decisions and felt their exclusion to be a detriment to patient care.”In terms of the burdens carried in making decisions about end-of-life care, some evidence suggests that physicians and nurses experience equal burdens. Physicians experience the burdens associated with having to make these decisions, and nurses feel the burden of having to carry out care decisions made by someone else.17 Given the shared burdens that members of the interdisciplinary team face, as well as the reported difficulties in end-of-life care decision making in the ICU, ensuring effective communication is a key feature of high-quality patient care.7 The following discussion is intended to demonstrate how clinical ethicists can be supportive of such strategies for effective communication and decision making.Medical recommendations like those pertaining to the care of patients such as Mrs H are based on best-practice standards of care and are informed by ethical principles like beneficence, nonmaleficence, and autonomy. Continued life-sustaining support in situations where benefit is in question can be regarded as futile, a concept with inherent ethical challenges. As Weijer et al18 point out, the values inherent in medical futility arguments often confuse treatment considered ineffective and treatment that will be effective but will ultimately result in a controversial outcome such as permanent unconsciousness. A team’s decision to not readmit a patient for ICU care can be an attempt to address futility based on controversial outcomes that the team may perceive as causing more harm for the patient than good. Poignantly stated, “if the welfare of the patient is the whole purpose of providing treatment and if that treatment brings needless suffering, then the whole purpose of medicine is defeated.”19 Although the concept of futility in ICU care is a subject worthy of ethical debate, it will not be the focus of this discussion. Rather, the subject of this discussion is the role of clinical ethicists in helping decision makers address ethical considerations such as futility.The results of inadequate communication, misunderstandings, or disagreements arising from divergent views about what is beneficent and the institutional realities surrounding resource allocation can be seen in the moral distress and subsequent moral residue experienced by both the patient’s family members and the health care staff involved. Moral distress occurs when a person can identify the ethically appropriate course of action, but does not feel able to carry this action forward because of barriers that may include lack of resources, legal limits, institutional obstacles, or imbalances in power, for example. Effects of moral distress on an individual can include feelings of anger, frustration, anxiety, or depression.20 Moral residue can be encountered when “deeply held beliefs, values and principles” are set aside at the expense of one’s personal sense of integrity.21 For families of patients, moral residue can manifest in lifelong memories about difficult health care experiences.The experience of moral distress and moral residue are of particular importance to critical care nursing. Some evidence indicates a relationship between an ICU care nurse’s perception of providing futile care, inadequate communication about the care plan within the interdisciplinary team, and the incidence of moral distress, emotional exhaustion, and burnout.3,16,22 Cases like that of Mrs H can present these kinds of challenges to nurses providing care at the bedside. The discussion also highlights how clinical ethicists can assist interdisciplinary teams in addressing ethical challenges that can lead to moral distress.Finally, the ethical climate within our health care settings is shaped by the organizational values inherent in hospital policies, approaches to handling conflict, allocation of human and material resources, the daily-lived experience of staff providing care, and those to whom care is provided.23,24 Economic constraints, resource allocation difficulties, and staffing shortages contribute to the moral climate of health settings, the moral distress of staff, and burnout among health care providers.25,26In cases such as that of Mrs H, the ethical challenges are not just about treatment requests considered inadvisable but also about scarce resources like ventilator-equipped beds in ICU settings. In the minds of some families, the need for an ICU bed is the primary reason that palliative measures are now being recommended. When conflict surrounds decisions about level of care, it is the bedside ICU nurse who fields the questions, concerns, and emotions expressed by patients’ families.It is through such challenging decision making, in which no agreement is reached, that the moral climate is regrettably defined for all persons with a stake in the decision. However oppressive these disagreements feel to both health care professionals and patients’ family members, most often the disagreements, ironically, do not result from a lack of good intentions on either side of the debate. Rather, these circumstances reflect the complex ethical challenges that are inherent in contemporary health care settings. Clinical ethicists can be an important resource to health care teams, patients, and patients’ families in addressing these difficult challenges.Clinical ethicists who provide consultative services may be requested by the ICU team when conflicts such as the one surrounding the planning of Mrs H’s level of care arise. What are the characteristics, skills, and knowledge that make clinical ethicists a useful resource in helping to address conflict over decisions about level of care for stable but critically ill ICU patients?Clinical ethicists come from a diverse background of training: clinical and academic experiences that include but are not limited to medicine, nursing, social work, theology, philosophy, and anthropology. Most clinical ethicists have advanced academic degrees and/or training in clinical ethics. Despite this diversity in background, clinical ethicists engage in common functions: consultative services, research, education and the development of policies pertaining to patient care and organizational ethics.27–29Clinical ethicists are trained to view ethical problems within an interdisciplinary health care environment whose primary commitment should always be to provide the best patient care possible. Patient care and goals for care are best understood through the wishes, beliefs, and values of the patient and the patient’s family. The approach taken by clinical ethicists in providing consultation is to model interdisciplinary collaboration and effective communication with patients and their families, with the objective of enhancing ethical decision making.28–30In effect, clinical ethicists in cases such as the one involving Mrs H act as facilitators of communication and decision making about goals for care, while directing attention to the ethical considerations underlying such decisions. Generally, clinical ethicists can help clarify differences in the way ethical considerations such as sanctity or quality of life are valued on the basis of religious, personal, or cultural values. Some evidence suggests that ethics consultation generally has been useful in preventing or resolving conflicts, and in reducing the incidence of prolonged controversial treatment.31,32 Current trends in the training and education of clinical ethicists have emphasized skills, knowledge, and expertise better suited to provide ethics support in real time as dilemmas and conflict around decisions related to patient care unfold.28What is particularly important about the approach used by most clinical ethicists is the emphasis placed on fair and just processes for decisions of such importance and consequence in an ICU environment.In cases such as the one involving Mrs H, it is not just what decision ought to be made that is of interest to clinical ethicists, but if and why a particular decision is ethically defensible. If so, to whom is it ethically defensible? How ought discussions and conflicts be managed? These questions raise ethical concerns about justice, fairness, and a reasoned approach to decisions of such consequence. Ethical consideration must also be given to the moral climate, how people feel treated, and the concerns and opinions of key persons with a stake in the decision making, with overarching consideration given to trust in the process used to make such important decisions. Therefore clinical ethicists are as concerned with procedural fairness as they are with outcome when assisting with ethically challenging situations in health care settings.Principal aspects of procedural fairness are as follows: that the process for decision making be as transparent as possible to all involved; that concerns of key persons with a stake in the decision making be considered; that the reasons or rationale behind decisions can be understood and defended; that people responsible for decisions be held accountable; and that in the event disagreement occurs, decisions can be reviewed, taking into account the concerns of those who disagree.33 Process-driven approaches to decision making or to resolving conflict used by clinical ethicists are dependent on using frameworks to guide communication. Such frameworks for communication are not just ethically defensible; they have been shown empirically to be part of good practice standards in ICU settings.6,11,34 Lilly et al35(pS398) found that using a standardized framework for communication resulted in health care providers seeing decision making as a “process rather than as an event”—an attribute consistent with principles for ethical decision making.An example of such a framework to guide communication is described by Lautrette et al,34 who identify such attributes as timeliness, opportunities for the patient’s family to speak, use of appropriate and sensitive language, and ensuring that the setting is private and comfortable. In addition to these attributes, clinical ethicists would include discussion of the values in conflict and ethical obligations that underscore decision making.Frameworks for communication appear well supported in the literature anyway, so what makes the involvement of clinical ethicists of added benefit?Despite advances in implementing communication strategies in many settings, improvement in general is needed in managing communication, enhancing understanding, and meeting needs of ICU patients and their families.6,8,10,11 Furthermore, Sherwin36 believes that communication frameworks and hospital policies can be used coercively, to enforce a particular outcome, if those who lead these discussions or who adhere to policies are not reflecting on personal biases, institutional pressures, and ethical considerations.Clinical ethicists act as facilitators, helping to raise important ethical questions, model effective communication, and model ethical decision making by using teachable moments to heighten the awareness and understanding of the ethical considerations in each case. Within most health care settings, necessary and unavoidable imbalances in power are present between various persons who have a stake in the decision making. Clinical ethicists assist in discussing the values that underlie decisions of such importance, making these transparent to and understood by key involved parties. They model the principles of procedural fairness. Inherently challenging decisions about level of care, as in the case of Mrs H, are often met with challenging feelings and opinions, making fairness and ethical reflection more important than less to involved parties.Clinical ethicists advocate for policies and practices that reduce coercive consequences that can arise when members of the ICU treatment team, patients, or patients’ family members feel overruled or dismissed. In conducting an ethics consultation, the clinical ethicist leads discussions with the interdisciplinary team members about ethical considerations that contribute to moral distress, for example, the conflict in the way benefit and harm associated with a particular therapy or level of care are understood. In most instances, the clinical ethicist must ensure that concerns raised by members of the interdisciplinary team and concerns expressed by patients’ family members are shared and considered. This process is handled in an open and transparent manner. In creating an opportunity through the consultative process for the interdisciplinary team to address concerns, related to both areas of conflict and moral distress, clinical ethicists are also capitalizing on valuable teachable moments in which knowledge about ethics and decision making can be enhanced. As Kälvemark Sporrong et al37(p835) concluded, “Ethical competence is a key factor in preventing or reducing moral distress.”We have found that consultation on an individual case often helps treatment teams identify preventative strategies to reduce or avoid conflict and to engage in more timely discussion about ethics the next time a complex care situation arises. Such measures are necessary in creating a moral climate in which discussion about ethics in daily practice can be supported and thus reducing the effects or incidence of moral distress. The potential exists for all members of the interdisciplinary ICU team, including the most responsible physician, to be so engaged in ethical reflection and decision making on challenging cases. Clinical ethicists model skills of effective communication, ethical reflection, and decision making as well as principles of procedural fairness within the consultative process that they facilitate.We are not suggesting that effective communication, procedural fairness, ethical reflection, and decision making are deficient whenever clinical ethicists are not involved in such cases. In reality, complex and ethically challenging cases occur routinely in ICU settings, most often without the involvement of clinical ethicists. What is being proposed is that clinical ethicists should be seen as a valuable resource for addressing challenging cases in the ICU. Better understanding is needed about the role of clinical ethicists and the kinds of assistance they can provide.In most cases, the ICU team and patient’s family agree on recommendations that comfort measures be provided on a medical intermediate care unit or a palliative care unit for a stable but critically ill patient. However, as in the case of Mrs H, these decisions may be met with considerable emotion from the patient’s family and with differences of opinion about benefit and the appropriate level of care. We think that clinical ethicists can be a valuable resource when challenging cases arise. By providing consultation, clinical ethicists can model effective communication, ethical reflection, and decision making, while following principles of procedural fairness, all of which are key elements to upholding ethics in daily practice and are of particular importance when conflict occurs about level of care in the ICU.The following are practical considerations for critical care nurses:

The social work role in nursing facilities is a valuable resource in the lives of residents, families, and staff. Whether the nursing facility is called a nursing home, a long-term care center, or a subacute or a rehabilitation center, the social worker is an essential, vital member of the healthcare team. As in other settings, social workers in nursing home settings use professional casework skills to help people in particular times of crisis and stress. As a contributing member of the interdisciplinary team, the social worker provides an opportunity for residents and families to examine problems, mobilize existing resources and/or refer to resources that are more appropriate, and develop positive resolutions. This third revised edition of <italic>A Guide for Nursing Home Social Workers</italic> provides the knowledge and information that social workers, regardless of their education and experience, need in the performance of their role in nursing home settings. The book is divided into six parts to help categorize the content: Social Work in Nursing Facilities; The Interdisciplinary Team; Nursing Facilities and Governing Oversights; Diagnosis, Treatment, and Care Issues; Ethics; and Community Liaisons. The first part presents key informational topics that social workers may utilize in their day-to-day work, such as assessments, care planning, and documentation. The second part contains information about team meetings, room changes, staff training and in-services, and social work consultation. The third part addresses a range of topics including Omnibus Budget Reconciliation Act (<abbrev>OBRA</abbrev>) and the Minimum Data Set 3.0, as well as state surveys and facility policies. The fourth part provides current information about care topics such as neurocognitive disorders, mood disorders, medication, and pain in older adults, as well as groups, families, and diversity within the nursing facility. The fifth part contains chapters on social work ethics, legal representation, abuse, neglect, mistreatment, and confidentiality. The final part includes chapters on resident finances, transfer and discharge, community resources, funeral arrangements, pandemics and disaster planning, and trauma-informed care and adverse childhood experiences. The goal of this guide is to provide some of the necessary supports and assistance needed by social workers in this field as they pursue their profession of helping residents, families, and others involved in long-term care.