Governing Integrated Health and Social Care: An Analysis of Experiences in Three European Countries.

Purpose: Achieving greater health and social care integration is a policy priority in many countries, but challenges remain. We focused on governance and accountability for integrated care and explored arrangements that shape more integrated delivery models or systems in Italy, the Netherlands and Scotland. We also examined how the COVID-19 pandemic affected existing governance arrangements. Design/methodology/approach: A case study approach involving document review and semi-structured interviews with 35 stakeholders in 10 study sites between February 2021 and April 2022. We used the Transparency, Accountability, Participation, Integrity and Capability (TAPIC) framework to guide our analytical enquiry. Findings: Study sites ranged from bottom-up voluntary agreements in the Netherlands to top-down mandated integration in Scotland. Interviews identified seven themes that were seen to have helped or hindered integration efforts locally. Participants described a disconnect between what national or regional governments aspire to achieve and their own efforts to implement this vision. This resulted in blurred, and sometimes contradictory, lines of accountability between the centre and local sites. Flexibility and time to allow for national policies to be adapted to local contexts, and engaged local leaders, were seen to be key to delivering the integration agenda. Health care, and in particular acute hospital care, was reported to dominate social care in terms of policies, resource allocation and national monitoring systems, thereby undermining better collaboration locally. The pandemic highlighted and exacerbated existing strengths and weaknesses but was not seen as a major disruptor to the overall vision for the health and social care system. Research limitations: We included a relatively small number of interviews per study site, limiting our ability to explore complexities within sites. Originality: This study highlights that governance is relatively neglected as a focus of attention in this context but addressing governance challenges is key for successful collaboration.

Work Difficulties in People with Multiple Sclerosis.

PURPOSE: This study identifies potential predictors of unemployment and describes specific work difficulties and their determinants in a subgroup of employed people with multiple sclerosis (PwMS). The specific work difficulties were evaluated using a validated tool that measures the impact of respondents' symptoms and of workplace features. METHODS: A cross-sectional study was carried out in Italy during 2021-2022. The subjects included were adults (18-65 years) with a diagnosis of MS, currently employed or unemployed. Logistic regression models were used to determine the association between each potential determinant and employment status, while linear regression models were used to determine the association between determinants and specific work difficulties. RESULTS: The main risk factors associated with a higher risk of being unemployed were being older, living in the South of Italy/islands, and having a higher disability level, while protective factors against unemployment were having a high level of education and 'stable' employment (an open-ended contract). Fatigue was found to be associated with all work difficulties analyzed; mood disorders emerged as the main predictors of mental health-related work difficulties; level of disability and comorbidity significantly impacted physical health-related ones, and a good quality of life was found to improve both workplace-related and mental health-related difficulties at work. CONCLUSION: Identifying the most significant difficulties is a crucial step in the development of vocational rehabilitation interventions tailored to maximize the ability of PwMS to handle their job-related duties and demands.

Spatial and temporal distribution of the prevalence of unemployment and early retirement in people with multiple sclerosis: A systematic review with meta-analysis.

BACKGROUND: We aimed to summarise the prevalence of unemployment and early retirement among people with MS and analyze data according to a spatio-temporal perspective. METHODS: We undertook a systematic search of PubMed/MEDLINE, Scopus, SciVerse ScienceDirect, and Web of Science. We included any peer-reviewed original article reporting the prevalence of unemployment and early retirement in the working-age population with MS. We excluded articles off-topic, with other study designs, whose study sample were unlikely to be representative of the MS population and in case of unavailability of the full text or essential information. A random-effects meta-analysis was used to measure overall prevalence estimates of unemployment and early retirement. We used meta-regression and subgroup analysis to evaluate potential moderators of prevalence estimates and the leave-one-out method for sensitivity analyses. RESULTS: Our research identified 153 studies across 29 countries encompassing 188436 subjects with MS. The pooled overall effect size for unemployment and early retirement was 35.6% (95% CI 32.8-38.4; I2 = 99.31) and 17.2% (95% CI 14.6-20.2; I2 = 99.13), respectively. The prevalence of unemployment varied according to the year of publication (p < 0.001) and there was a statistically significant decrease in the prevalence of unemployment over time (p = 0.042). Regarding early retirement, only seven (31.8%) estimates obtained from studies that were published before 2010 were below the overall effect size in comparison to 27 (60.0%) estimates extracted from data published between 2010 and 2021 (p = 0.039). There was a significant difference in prevalence according to countries (p < 0.001). Psychiatric illness was an important clinical feature responsible for patients leaving the workforce in regions with a high MS prevalence. CONCLUSIONS: Unemployment and early retirement due to MS remain highly prevalent, despite a slight decline in the last decade. The prevalence of unemployment and early retirement varies globally.

Occupational outcomes of people with multiple sclerosis: a scoping review.

OBJECTIVES: To update the knowledge on the occupational outcomes associated with multiple sclerosis (MS), systematically examine the extent, scope and nature of the pre-existing literature and identify research gaps in the existing literature. DESIGN: Scoping review. DATA SOURCES: A comprehensive database search of PubMed/MEDLINE, Scopus, SciVerse ScienceDirect and Web of Science was performed. There were no time limits. ELIGIBILITY CRITERIA: We included any peer-reviewed original article reporting the occupational outcomes of people with MS between the ages of 18 and 65 years. We excluded those off-topic and with insufficient information. METHODS: This review was conducted following the Joanna Briggs Institute recommendations and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for scoping review checklist. Screening, reading of full-texts and data extraction was performed in a standardised way by expert reviewers from 14 July 2021 to 31 October 2021. We provided a narrative synthesis and an overview of findings. RESULTS: The initial systematic search yielded 104 228 results. After removing duplicates and applying the exclusion criteria, 403 articles were included in the review. In total, the studies evaluated 492 062 subjects with MS. One hundred fifty-four (38.2%) articles were published in the last 5 years, mostly from Europe and North America (50.9% and 33.0%, respectively). Concerning the occupational outcomes, studies mostly addressed unemployment (311, 77.2%), early retirement (120, 29.8%), disability pension (117, 29.0%), sick leave (77, 19.1%), the indirect cost of MS (74, 18.4%) and work characteristics (57, 14.1%). The results were categorised into seven subtopics: 'Changes in work and occupational status due to MS', 'work-related socio-economic consequences of MS', 'risk factors for unfavourable occupational outcomes', 'reported barriers to employment', 'reported job accommodations and vocational rehabilitation strategies', 'job satisfaction, stigma, and disclosing the diagnosis in the workplace' and 'rating clinical scales'. CONCLUSIONS: There are several issues that deserve further in-depth study by the scientific community in order to improve the occupational outcomes of people with MS.

Observations of community-based multidisciplinary team meetings in health and social care for older people with long term conditions in England.

BACKGROUND: Community-based multi-disciplinary teams (MDTs) are the most common means to encourage health and social care service integration in England yet are rarely studied or directly observed. This paper reports on two rounds of non-participant observations of community-based multi-disciplinary team (MDT) meetings in two localities, as part of an evaluation of the Integrated Care and Support Pioneers Programme. We sought to understand how MDT meetings coordinate care and identify their 'added value' over bilateral discussions. METHODS: Two rounds of structured non-participant observations of 11 MDTs (28 meetings) in an inner city and mixed urban-rural area in England (June 2019-February 2020), using a group analysis approach. RESULTS: Despite diverse settings, attendance and caseloads, MDTs adopted similar processes of case management: presentation; information seeking/sharing; narrative construction; solution seeking; decision-making and task allocation. Patient-centredness was evident but scope to strengthen 'patient-voice' exists. MDTs were hampered by information governance rules and lack of interoperability between patient databases. Meetings were characterised by mutual respect and collegiality with little challenge. Decision-making appeared non-hierarchical, often involving dyads or triads of professionals. 'Added value' lay in: rapid patient information sharing; better understanding of contributing agencies' services; planning strategies for patients that providers had struggled to find the right way to engage satisfactorily; and managing risk and providing mutual support in stressful cases. CONCLUSIONS: More attention needs to be given to removing barriers to information sharing, creating scope for constructive challenge between staff and deciding when to remove cases from the caseload.

Patients with multiple sclerosis: a burden and cost of illness study.

BACKGROUND: Multiple sclerosis (MS) is a chronic neuroinflammatory and neurodegenerative disease negatively impacting patients' physical, psychological and social well-being with a significant economic burden. OBJECTIVES: The study estimates MS burden and cost of illness in Italy from a societal perspective in 2019. METHODS: Information on the impact of the disease on daily activities, symptoms, employment, resource utilization and the role of caregivers was collected through questionnaires completed by 944 patients and caregivers. Results were stratified according to both disease severity and payer. Mean costs and overall costs were extrapolated from the sample to the Italian MS population considering published distribution of severity. RESULTS: The study showed a great impact of the disease on daily and work activities increasing with the disability. The overwhelming burden of fatigue emerged. Mean annual costs were estimated at €39,307/patient (€29,676, €43,464 and €53,454 in mild, moderate and severe cases, respectively). Direct healthcare costs were the major component (€21,069), followed by indirect costs (€15,004). The overall cost of the disease in Italy was €4.8 billion. The National Healthcare System (NHS) sustained most of the costs (80%), most notably direct healthcare costs, while patients paid almost all non-healthcare expenses. CONCLUSIONS: This study confirmed that MS carries a substantial burden to patients and society, highlighting the need for awareness of this disease.

Public attitudes to, and behaviours taken during, hot weather by vulnerable groups: results from a national survey in England.

BACKGROUND: Hot weather leads to increased illness and deaths. The Heatwave Plan for England (HWP) aims to protect the population by raising awareness of the dangers of hot weather, especially for those most vulnerable. Individuals at increased risk to the effects of heat include older adults, particularly 75+, and those with specific chronic conditions, such as diabetes, respiratory and heart conditions. The HWP recommends specific protective actions which relate to five heat-health alert levels (levels 0-4). This study examines the attitudes to hot weather of adults in England, and the protective measures taken during a heatwave. METHODS: As part of a wider evaluation of the implementation and effects of the HWP, a survey (n = 3153) and focus groups, a form of group interview facilitated by a researcher, were carried out after the June 2017 level 3 heat-health alert. Survey respondents were categorised into three groups based on their age and health status: 'vulnerable' (aged 75+), 'potentially vulnerable' (aged 18-74 in poor health) and 'not vulnerable' (rest of the adult population) to hot weather. Multivariable logistic regression models identified factors associated with these groups taking protective measures. In-person group discussion, focused on heat-health, were carried out with 25 people, mostly aged 75 + . RESULTS: Most vulnerable and potentially vulnerable adults do not consider themselves at risk of hot weather and are unaware of the effectiveness of important protective behaviours. Only one-quarter of (potentially) vulnerable adults reported changing their behaviour as a result of hearing hot weather-related health advice during the level 3 alert period. Focus group findings showed many vulnerable adults were more concerned about the effects of the sun's ultra-violet radiation on the skin than on the effects of hot temperatures on health. CONCLUSIONS: Current public health messages appear to be insufficient, given the low level of (potentially) vulnerable adults changing their behaviour during hot weather. In the context of increasingly warmer summers in England due to climate change, public health messaging needs to convince (potentially) vulnerable adults of all the risks of hot weather (not just effects of sunlight on the skin) and of the importance of heat protective measures.

First Wave of COVID-19 Pandemic in Italy: Data and Evidence.

INTRODUCTION: Unexpectedly, Italy was the first Western country to face COVID-19 outbreak, but promptly it was the first one to adopt stringent procedures to stem the spread of infection. The objective of this study was to describe the epidemiological situation and comorbidities in Italy, in addition to containment measures and health system and social protection strengthening ones applied in this country. METHODS: Available population data were collected, managed, and analysed from the daily reports on COVID-19 published every day, from 1 February to 8 June 2020. RESULTS: Lombardia, a northern region of Italy, is considered the epicentre for the wave of the infection with the first diagnosed case, but in a few weeks other regions were involved (with Piemonte, Emilia-Romagna, and Veneto covering more than 70% of the Italian total cases). In the European context, after 3 months of containing measures of the sanitary emergency, Italy is the fourth country for the number of total positive cases (with 235,278 total case as at 8 June 2020), after Russia, the United Kingdom, and Spain, whereas it is the second for the number of deaths (with 33,964 deaths as at 8 June 2020), only after the United Kingdom. Regarding incidence, the curve of daily new cases shows an increasing trend up to 22 March 2020 with 6557 new daily cases and then a decreasing trend up to 280 as at 8 June. This turnaround can be explained by the application of national lockdown starting from 9 March and by the following 14 days of incubation of infection. Profiles of subjects at major risk of poor prognosis and death for COVID-19 are elderly (mean age of 80 years) and with three or more comorbidities. These characteristics can partially explain the high lethality rate for coronavirus observed in Italy, which is the European country with the highest share of elderly. In addition, other possible explanations of this high lethality are differences in testing policies among countries that influence the number of asymptomatic or pauci-symptomatic patients diagnosed as coronavirus positive, together with differences in definition and in the way of recording deaths for coronavirus. In the absence of a vaccine, severe nonpharmaceutical interventions (NPIs), including national lockdown, quarantine, social distancing, and use of facial masks, have been applied with success to reduce the virus spread and the burden on the National Health System. In addition to these stringent containment measures to fight the pandemic, other policies have been adopted searching to ensure economic sustainability, social safety, and stability. CONCLUSION: Italy was the first Western country with a wide spread of COVID-19, but it was the first one to introduce containment restrictions, tightening them week by week and subjecting the 60 million people living in the country to unprecedented limitations. Many measurements have been adopted by the government, such as lockdown during the early stages of infection and subsequent social distancing and wearing face masks in public areas. Italians were compliant with all the measures ordered by the government and their discipline reflected in the COVID numbers: the curve of daily new cases after a peak at the end of March now shows a consistent decreasing trend up. In this phase of current reduction of virus diffusion, it is crucial to accommodate the need to continue protecting citizens from the risk of infection with the undeferrable, although gradual, restart of the economic and social system. This new scenario requires an active collaboration among all the actors: statutory bodies, employers, civil society, and the third sector.

Impact of the COVID-19 pandemic on persons with multiple sclerosis: Early findings from a survey on disruptions in care and self-reported outcomes.

OBJECTIVE: To describe the disruptions in care experienced by persons with Multiple Sclerosis in Italy due to the COVID-19 pandemic and the self-reported impact on their health and wellbeing. METHODS: A cross-sectional online survey was completed by 2722 persons with Multiple Sclerosis, after Italy instituted a national lockdown in response to the pandemic. RESULTS: Persons with Multiple Sclerosis reported that the pandemic caused broad disruptions to usual health and social care services, which impacted on their health and wellbeing. Disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure and on carer's stress. Psychological consequences were associated with interruption to usual psychological support, and concerns about the safety of care delivered in person. CONCLUSIONS: The quality of life of persons with Multiple Sclerosis depends greatly on prompt access to a broad range of health and care services. Negative psychological impacts reported by persons with Multiple Sclerosis with less severe disabilities show that accessible integrated services are crucial for maintenance of their wellbeing. Most persons with Multiple Sclerosis with more severe disability experienced negative impacts on perceived health. Their carers compensating for lack of social input resulted in care overburden. As continuity of care is crucial for persons with Multiple Sclerosis, as well as for persons with chronic conditions in general, strategies must be in place to ensure it is included in future pandemic response plans.

The Friends and Family Test in general practice in England: a qualitative study of the views of staff and patients.

BACKGROUND: The Friends and Family Test (FFT) was introduced into general practices in England in 2015 to provide staff with information on patients' views of their experience of care. AIM: To examine the views of practice staff and patients of the FFT, how the results are used, and to recommend improvements. DESIGN AND SETTING: A qualitative study of a national representative sample of 42 general practices. METHOD: Semi-structured interviews with 43 clinicians, 48 practice managers, and 27 patient representatives. Interviews were audiotaped, transcribed, and analysed thematically. RESULTS: Although the FFT imposed little extra work on practices, it was judged to provide little additional insight over existing methods and to have had minimal impact on improving quality. Staff lacked confidence in the accuracy of the results given the lack of a representative sample and the risk of bias. The FFT question was judged to be inappropriate as in many areas there was no alternative practice for patients to choose, patients' individual needs would not be the same as those of their friends and relatives, and an overall assessment failed to identify any specific aspects of good- or poor-quality care. Despite being intended to support local quality improvement, there was widespread unease about the FFT, with many responders perceiving it as a tool for national bodies to monitor general practices. CONCLUSION: If the use of a single-item questionnaire is to continue, changes should be made to the wording. It should be focused on stimulating local quality improvement, and practice staff should be supported to use the results effectively.