Long-term Conditions In England Research Articles

Comparing natural language processing representations of coded disease sequences for prediction in electronic health records.

Natural language processing (NLP) algorithms are increasingly being applied to obtain unsupervised representations of electronic health record (EHR) data, but their comparative performance at predicting clinical endpoints remains unclear. Our objective was to compare the performance of unsupervised representations of sequences of disease codes generated by bag-of-words versus sequence-based NLP algorithms at predicting clinically relevant outcomes. This cohort study used primary care EHRs from 6286233 people with Multiple Long-Term Conditions in England. For each patient, an unsupervised vector representation of their time-ordered sequences of diseases was generated using 2 input strategies (212 disease categories versus 9462 diagnostic codes) and different NLP algorithms (Latent Dirichlet Allocation, doc2vec, and 2 transformer models designed for EHRs). We also developed a transformer architecture, named EHR-BERT, incorporating sociodemographic information. We compared the performance of each of these representations (without fine-tuning) as inputs into a logistic classifier to predict 1-year mortality, healthcare use, and new disease diagnosis. Patient representations generated by sequence-based algorithms performed consistently better than bag-of-words methods in predicting clinical endpoints, with the highest performance for EHR-BERT across all tasks, although the absolute improvement was small. Representations generated using disease categories perform similarly to those using diagnostic codes as inputs, suggesting models can equally manage smaller or larger vocabularies for prediction of these outcomes. Patient representations produced by sequence-based NLP algorithms from sequences of disease codes demonstrate improved predictive content for patient outcomes compared with representations generated by co-occurrence-based algorithms. This suggests transformer models may be useful for generating multi-purpose representations, even without fine-tuning.

Ethnic inequalities in age-related patterns of multiple long-term conditions in England: Analysis of primary care and nationally representative survey data.

Little is known about the patterning of multiple long-term conditions (MLTCs) by age, ethnicity and across conceptualisations of MLTCs (e.g. MLTCs with/without mental health conditions [MHCs]). We examined ethnic inequalities in age-related patterns of MLTCs, and combinations of physical and MHCs using the English GP Patient Survey and Clinical Practice Research Datalink. We described the association between MLTCs and age using multilevel regression models adjusting for sex and area-level deprivation with patients nested within GP practices. Similar analyses were repeated for MLTCs that include MHCs. We observed ethnic inequalities from middle-age onwards such as older Pakistani, Indian, Black Caribbean and Other ethnic people had increased risk of MLTCs compared to white British people, even after adjusting for area-level deprivation. Compared to white British people, Gypsy and Irish Travellers had higher levels of MLTCs across the age groups, and Chinese people had lower levels. Pakistani and Bangladeshi people aged 50-74years were more likely than white people to report MLTCs that included MHCs. We find clear evidence of ethnic inequalities in MLTCs. The lower prevalence of MLTCs that include MHCs among some minoritised ethnic groups may be an underestimation due to underdiagnosis and/or inadequate primary care and requires further scrutiny.

Socioeconomic gradient in mortality of working age and older adults with multiple long-term conditions in England and Ontario, Canada

BackgroundThere is currently mixed evidence on the influence of long-term conditions and deprivation on mortality. We aimed to explore whether number of long-term conditions contribute to socioeconomic inequalities in mortality, whether the influence of number of conditions on mortality is consistent across socioeconomic groups and whether these associations vary by working age (18–64 years) and older adults (65 + years). We provide a cross-jurisdiction comparison between England and Ontario, by replicating the analysis using comparable representative datasets.MethodsParticipants were randomly selected from Clinical Practice Research Datalink in England and health administrative data in Ontario. They were followed from 1 January 2015 to 31 December 2019 or death or deregistration. Number of conditions was counted at baseline. Deprivation was measured according to the participant’s area of residence. Cox regression models were used to estimate hazards of mortality by number of conditions, deprivation and their interaction, with adjustment for age and sex and stratified between working age and older adults in England (N = 599,487) and Ontario (N = 594,546).FindingsThere is a deprivation gradient in mortality between those living in the most deprived areas compared to the least deprived areas in England and Ontario. Number of conditions at baseline was associated with increasing mortality. The association was stronger in working age compared with older adults respectively in England (HR = 1.60, 95% CI 1.56,1.64 and HR = 1.26, 95% CI 1.25,1.27) and Ontario (HR = 1.69, 95% CI 1.66,1.72 and HR = 1.39, 95% CI 1.38,1.40). Number of conditions moderated the socioeconomic gradient in mortality: a shallower gradient was seen for persons with more long-term conditions.ConclusionsNumber of conditions contributes to higher mortality rate and socioeconomic inequalities in mortality in England and Ontario. Current health care systems are fragmented and do not compensate for socioeconomic disadvantages, contributing to poor outcomes particularly for those managing multiple long-term conditions. Further work should identify how health systems can better support patients and clinicians who are working to prevent the development and improve the management of multiple long-term conditions, especially for individuals living in socioeconomically deprived areas.

Socioeconomic gradient in mortality of working age and older adults with multiple long-term conditions in England and Ontario, Canada.

ObjectivesThere is mixed evidence on the influence of number of conditions on inequalities in mortality, we explored the association between number of conditions and deprivation on mortality whilst assessing the difference between working age and older adults. We replicated the analysis in England and Ontario, to provide a cross-jurisdiction comparison. ApproachWe used individual level-linked data from primary care activity, secondary care and mortality data in England and Ontario. For both jurisdictions, we took a random sample of 600,000 adults from 1 January 2015 and followed them up till 31 December 2019. We used cox proportional hazard to test the influence of deprivation (measured using area-level deprivation in deciles) and number of conditions (measured at baseline and capped at six conditions) on survival. Age and sex were also measured at baseline. Analyses were stratified by working age (18-64 years) and older adults (65+ years) and were repeated for England and Ontario. ResultsDeprivation gradient in mortality rate was steeper in working age than older adults in both jurisdictions. Number of conditions was associated with increased mortality rate, this was stronger for working age than older adults, in England (working age HR = 1.60, 95% CI 1.56,1.64 and older adults HR= 1.26, 95% CI 1.25,1.27) and Canada (working age HR=1.69, 95% CI 1.66,1.72 and older adults HR= 1.39, 95% CI 1.38,1.40). After accounting for number of conditions, the mortality rate associated with deprivation decreased but remained significant. The interaction between number of conditions and deprivation showed that adults with more conditions have a higher mortality rate and those living in deprived areas also have a higher mortality rate but having more conditions attenuates the deprivation gradient in mortality. ConclusionNumber of conditions contribute to higher mortality rate and inequalities in morality, this is stronger for working age than older adults in England and Ontario. The fragmented health-care system may be contributing to poorer outcomes, further research should help identify which part of the pathway is driving these inequalities further.

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

BackgroundCommunity-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.MethodsTwo 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.ResultsDespite 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.ConclusionsMore 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. Supplementary InformationThe online version contains supplementary material available at 10.1186/s12913-022-07971-x.

A comparison over 2 decades of disability-free life expectancy at age 65 years for those with long-term conditions in England: Analysis of the 2 longitudinal Cognitive Function and Ageing Studies.

BackgroundPrevious research has examined the improvements in healthy years if different health conditions are eliminated, but often with cross-sectional data, or for a limited number of conditions. We used longitudinal data to estimate disability-free life expectancy (DFLE) trends for older people with a broad number of health conditions, identify the conditions that would result in the greatest improvement in DFLE, and describe the contribution of the underlying transitions.Methods and findingsThe Cognitive Function and Ageing Studies (CFAS I and II) are both large population-based studies of those aged 65 years or over in England with identical sampling strategies (CFAS I response 81.7%, N = 7,635; CFAS II response 54.7%, N = 7,762). CFAS I baseline interviews were conducted in 1991 to 1993 and CFAS II baseline interviews in 2008 to 2011, both with 2 years of follow-up. Disability was measured using the modified Townsend activities of daily living scale. Long-term conditions (LTCs—arthritis, cognitive impairment, coronary heart disease (CHD), diabetes, hearing difficulties, peripheral vascular disease (PVD), respiratory difficulties, stroke, and vision impairment) were self-reported. Multistate models estimated life expectancy (LE) and DFLE, stratified by sex and study and adjusted for age. DFLE was estimated from the transitions between disability-free and disability states at the baseline and 2-year follow-up interviews, and LE was estimated from mortality transitions up to 4.5 years after baseline. In CFAS I, 60.8% were women and average age was 75.6 years; in CFAS II, 56.1% were women and average age was 76.4 years. Cognitive impairment was the only LTC whose prevalence decreased over time (odds ratio: 0.6, 95% confidence interval (CI): 0.5 to 0.6, p < 0.001), and where the percentage of remaining years at age 65 years spent disability-free decreased for men (difference CFAS II–CFAS I: −3.6%, 95% CI: −8.2 to 1.0, p = 0.12) and women (difference CFAS II–CFAS I: −3.9%, 95% CI: −7.6 to 0.0, p = 0.04) with the LTC. For men and women with any other LTC, DFLE improved or remained similar. For women with CHD, years with disability decreased (−0.8 years, 95% CI: −3.1 to 1.6, p = 0.50) and DFLE increased (2.7 years, 95% CI: 0.7 to 4.7, p = 0.008), stemming from a reduction in the risk of incident disability (relative risk ratio: 0.6, 95% CI: 0.4 to 0.8, p = 0.004). The main limitations of the study were the self-report of health conditions and the response rate. However, inverse probability weights for baseline nonresponse and longitudinal attrition were used to ensure population representativeness.ConclusionsIn this study, we observed improvements to DFLE between 1991 and 2011 despite the presence of most health conditions we considered. Attention needs to be paid to support and care for people with cognitive impairment who had different outcomes to those with physical health conditions.

Enablers and barriers for engaged, informed individuals and carers: left wall of the House of Care framework.

Engaged and informed individuals and carers can mean different things to different people. In this article we use the definition from the Coalition for Collaborative Care: ‘... people have the right support, knowledge, skills, power — and of course confidence — to [manage their care and support] and live the lives they want.’ 1 In the recent editorial on rhetoric and reality in person-centred care Mathers and Paynton provide a persuasive narrative as to why person-centred care (PCC) should be adopted as ‘the norm’ and how the introduction of collaborative care and support planning (CCSP), as a manifestation of this approach, will facilitate its implementation, particularly for people with long-term conditions (LTCs).2 Key to the delivery of both PCC and CCSP, are the four components of the House of Care (HoC): This article, the second in a series of four articles considering each of the four components of the HoC model, will address both the enablers and barriers pertinent to individuals and carers being engaged and informed, to enable the delivery of CCSP. There are over 15 million people with LTCs in England, whose care accounts for over 50% of all GP appointments and 70% of all inpatient episodes. In total, people with LTCs account for over 70% of the total NHS and Social Care expenditure, and as the number of people with LTCs is set to increase then these …

Care Coordination in North Kirklees: an evidence-based model of case management for the modern NHS

5% of the population due to complex needs cost a typical NHS locality 40% of hospital and primary care costs. So care coordination models which deliver economic alongside quality benefits constitute a holy grail in integrated care: particularly in a financially-constrained system. Although historically weak, the evidence in support of cost-reducing case management has been growing in the last few years. The findings of randomised control trials in the US, alongside replication of promising results in the UK involving the presenters of this paper, are converging to isolate the key components of effective practice. North Kirklees CCG in collaboration with its coterminous GP Federation, Curo, has therefore established a programme of case management implementation informed by this best of recent evidence. Key participants in the development and delivery of the programme will describe the model design, and its rationale. A key component of the approach is to integrate clinical audit and outcomes measurement using the triple outcomes framework. The paper will share the approach to outcomes measurement and KPIs. Initially targeting people aged over 75 in year one, the service will widen its scope in year 2 and be offered to all high-risk patients as identified by Johns Hopkins ACG system (typically 5%). The patients are those complex needs at high risk, of unscheduled admission but for whom many current crises are preventable. There will be a focus on ‘medium-term high cost patients’ , a group identified in recent research by Johns Hopkins, who have patterns of high utilization spanning multiple years and share similar morbidity profiles. The aim here is standardizing for any impact of ‘regression to the mean on trends in hospital admissions. They paper will share the challenges in adapting this model to both the local population needs and new organizational structures and how these are being addressed. Since the participants have been architects of national policy in long-term conditions in England, and / or innovators in the field in the NHS, the presentation will also share some this learning and lessons for going forward. International Journal of Integrated Care – Volume 15, 27 May – URN:NBN:NL:UI:10-1-116976 – http://www.ijic.org/ 15th International Conference on Integrated Care, Edinburgh, UK, March 25-27, 2015 2

Economic inequalities in burden of illness, diagnosis and treatment of five long-term conditions in England: panel study

ObjectiveWe compared the distribution by wealth of self-reported illness burden (estimated from validated scales, biomarker and reported symptoms) for angina, cataract, depression, diabetes and osteoarthritis, with the distribution of self-reported...

Telehealth and access to urgent care: maximising the benefits for patients with long-term conditions in England

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)

Prevalence and Benefits of Care Plans and Care Planning for People with Long-Term Conditions in England

Among patients with long-term conditions, to determine the prevalence and benefits of care planning discussions and of care plans. Data from the 2009/10 General Practice Patient Survey, a cross sectional survey of 5.5 million patients in England. Outcomes were patient reports of: care planning discussions; perceived benefit from care planning discussions and resultant care plans. Patient and practice variables were included in multilevel logistic regression to investigate predictors of each outcome. Half the respondents (49%) reported a long-term condition and were eligible to answer the care planning questions. Of these, 84% reported having a care planning discussion during the last 12 months and most reported some benefit. Only 12% who reported a care planning discussion also reported being told they had a care plan. Patients who reported having a care plan were more likely to report benefits from care planning discussions. Several factors predicted the reporting of care planning and care plans of which the most important was patients' reports of the quality of interpersonal care. There is a gap between policy and current practice which might reflect uncertainty as to the benefits of care plans. There is, therefore, a need for rigorous evaluation of care plans.

Implementation of case management in long-term conditions in England: Survey and case studies

Our aim was to describe the current provision of case management arrangements in primary care for people with long-term conditions in England and identify the extent and nature of self-care support services within it. Cross-sectional survey of primary care trusts (PCTs) in England and four case studies using semi-structured interviews and focus groups. Services were predominantly nurse-led, typically by community matrons, and delivered on a geographical basis. Often multiple arrangements existed within a PCT but integration of services with local authority adult social care was not widespread. A range of self-care support services were utilized and often tuition was provided by case managers to patients in their own homes. Assessment, care coordination and direct support to patients were the principal tasks. Often care plans were limited to primary care services and did not include service costings. Links with nurse-led services within PCTs were evident but operational links with adult social care were poorly developed. This is consistent with previous research relating to the introduction of care management in social services in England which also resulted in a plethora of organizational arrangements. Case management for patients with long-term conditions is at an early stage of development. Effective links with a range of local services are required if care plans are going to be comprehensive.

Experience of continuity of care of patients with multiple long-term conditions in England

To examine patients' experiences of continuity of care in the context of different long-term conditions and models of care, and to explore implications for the future organization care of long-term conditions. Qualitative semi-structured interviews were carried out with 33 patients recruited from seven general practices in South London. Patients were selected who had one or more of the following long-term conditions: arthritis, coronary heart disease, stroke, hypercholesterolaemia, hypertension, diabetes mellitus or chronic obstructive pulmonary disease. Multiple morbidity was frequent and experiences of continuity were framed within patients' wider experiences of health care rather than the context of a particular diagnosis. Positive experiences of relational continuity were strongly associated with long-term GP-led or specialist-led care. Management continuity was experienced in the context of shared care in terms of transitions between professionals or organizations. Access and flexibility issues were identified as important barriers or facilitators of continuity. Across a range of long-term conditions, patients' experiences of health care can be understood in terms of nuanced understandings of relational and management continuity. Continuity experiences, meanings and expectations, as well as barriers and facilitators, are influenced by the model of care rather than type of condition.

Sea change or quick fix? Policy on long-term conditions in England

Long-term conditions is a policy area that has risen rapidly up the political agenda in England, culminating in the development of the National Health Service and Social Care Model in 2005, which is to be implemented over the following 2 years. The Model draws heavily upon US ideas of case management and proposes the creation of 3000 community matrons to undertake this role with the most vulnerable patients. Although welcomed in principle, the specific proposals in the Model have been subject to some criticism, and these issues are explored in the present paper. The problematic areas include patient identification, the transplanting of US models to England, the role of case management, workforce and funding issues, and the mix of medical and social models. The author concludes that there is a danger of long-term care policy developing an unduly health-focused approach at a time when the thrust of partnership working is towards an inclusive, whole-system model.