The nursing contribution to chronic disease management: a whole systems approach: Report for the National Institute for Health Research Service Delivery and Organisation programme

Background Transforming the delivery of care for people with Long Term Conditions (LTCs) requires understanding about how health care policies in England and historical patterns of service delivery have led to different models of chronic disease management (CDM). It is also essential in this transformation to analyse and critique the models that have emerged to provide a more detailed evidence base for future decision making and better patient care. Nurses have made, and continue to make, a particular contribution to the management of chronic diseases. In the context of this study, there is a particular focus on the origins of each CDM model examined, the processes by which nursing care is developed, sustained and mainstreamed, and the outcomes of each case study as experienced by service users and carers. Aims To explore, identify and characterise the origins, processes and outcomes of effective CDM models and the nursing contribution to such models using a whole systems approach Methods The study was divided into three phases: Phase 1: Systematic mapping of published and web-based literature. Phase 2: A consensus conference of nurses working within CDM. Sampling criteria were derived from the conference and selected nurses attended a follow up workshop where case study sites were identified. Phase 3: Multiple case study evaluation Sample: 7 case studies representing 4 CDM models. These were: i) public health nursing model; ii) primary care nursing model; iii) condition specific nurse specialist model; iv) community matron model. Methods: Evaluative case study design with the unit of analysis the CDM model (Yin, 2003): • semi-structured interviews with practitioners, patients, their carers, managers and commissioners • documentary analysis • psycho-social and clinical outcome data from specific conditions • children and young people: focus groups, age-specific survey tools. Benchmarking outcomes: Adults benchmarked against the Health Outcomes Data Repository (HODaR) dataset (Currie et al, 2005). Young people were benchmarked against the Health Behaviour of School aged Children Survey (Currie et al, 2008). Cost analysis: Due to limitations in the available data, a simple costing exercise was undertaken to ascertain the per patient cost of the nurse contribution to CDM in each of the models, and to explore patterns of health and social care utilisation. Analysis: A whole system methodology was used to establish the principles of CDM. i) The causal system is a “network of causal relationships” and focuses on long term trends and processes. ii) The data system recognises that for many important areas there is very little data. Where a particular explanatory factor is important but precise data are lacking, a range of methods should be employed to illuminate each factor as much as possible. iii) The organisational whole system emphasises how various parts of the health and social care system function together as a single system rather than as parallel systems. iv) The patient experience recognises that the whole system comes together and is embodied in the experience of each patient. Key findings While all the models strove to be patient centred in their implementation, all were linked at a causal level to disease centric principles of care which dominated the patient experience. Public Health Model • The users (both parents and children) experienced a well organised and coordinated service that is crossing health and education sectors. • The lead school nurse has provided a vision for asthma management in school-aged children. This has led to the implementation of the school asthma strategy, and the ensuing impacts including growing awareness, prevention of hospital admissions, confidence in schools about asthma management and healthier children. Primary Care Model • GP practices are providing planned and routine management of chronic disease, tending to focus on single diseases treated in isolation. Care is geared to the needs of the uncomplicated stable patient. • More complex cases tend to be escalated to secondary care where they may remain even after the patient has stabilised. • Patients with multiple diagnoses continue to experience difficulty in accessing services or practice that is designed to provide a coherent response to the idiosyncratic range of diseases with which they present. This is as true for secondary care as for primary care. • While the QOF system has clearly been instrumental in developing and sustaining a primary care nursing model of CDM, it has also limited the scope of the model to single diseases recordable on a register, rather than focus on patient centred care needs. Nurse Specialist Model • The model works under a disease focused system underpinned by evidence based medicine exemplified by NICE guidelines and NSF’s. • The model follows a template drawn from medicine and sustainability is significantly dependent on the championship and protectionism offered by senior medical clinicians. • A focus on self-management in LTCs gives particular impetus to nurse-led enablement of self-management. • The shift of LTC services from secondary care to primary care has often not been accompanied by a shift in expertise. Community Matron Model • The community matron model was distinctive in that it had been implemented as a top down initiative. • The model has been championed by the community matrons themselves, and the pressure to deliver observable results such as hospital admission reductions has been significant. • This model was the only one that consistently resulted in open access (albeit not 24 hours) and first point of contact for patients for the management of their ongoing condition. Survey Findings Compared to patients from our case studies those within HODaR visited the GP, practice nurse or NHS walk-in centres more, but had less home visits from nurses or social services within the six weeks prior to survey. HODaR patients also took significantly more time off work and away from normal activities, and needed more care from friends/ relatives than patients from our study within the last six weeks. The differences between the HODaR and case study patients in service use cannot easily be explained but it could be speculated when referring to the qualitative data that the case study patients are benefiting from nurse-led care. Cost analysis – The nurse costs per patient are at least ten times higher for community matrons conducting CDM than for nurses working in other CDM models. The pattern of service utilisation is consistent with the focus of the community matron role to provide intensive input to vulnerable patients. Conclusions Nurses are spearheading the kind of approaches at the heart of current health policies (Department of Health, 2008a). However, tensions in health policy and inherent contradictions in the context of health care delivery are hampering the implementation of CDM models and limiting the contribution nurses are able to make to CDM. These include: ? data systems that were incompatible and recorded patients as a disease entity ? QOF reinforced a disease centric approach ? practice based commissioning was resulting in increasing difficulties in cross health sector working in some sites ? the value of the public health model may not be captured in evaluation tools which focus on the individual patient experience. Recommendations Commissioners and providers 1. Disseminate new roles and innovations and articulate how the role or service fits and enhances existing provision. 2. Promote the role of the nurses in LTC management to patients and the wider community. 3. Actively engage with service users in shaping LTC services to meet patients’ needs. 4. Improve the support and supervision for nurses working within new roles. 5. Develop training and skills of nurses working in the community to enable them to take a more central role in LTC management. 6. Develop organisations that are enabling of innovation and actively seek funding for initiatives that provide an environment where nurses can reach their potential in improving LTC services. 7. Work towards data systems that are compatible between sectors and groups of professionals. Explore ways of enabling patients to access data and information systems for test results and latest information. 8. Promote horizontal as well as vertical integration of LTC services. Practitioners 1. Increase awareness of patient identified needs through active engagement with the service user. 2. Work to develop appropriate measures of nursing outcomes in LTC management including not only bureaucratic and physiological outcomes, but patient-identified outcomes. Implications of research findings 1. Investment should be made into changing patient perceptions about the traditional division of labour, the nurses’ role and skills, and the expertise available in primary care for CDM. 2. Development and evaluation of patient accessible websites where patients can access a range of information, their latest test results and ways of interpreting these. 3. Long-term funding of prospective evaluations to enable identification of CDM outcomes. 4. Mapping of patient experience and patient satisfaction so that the conceptual differences between these two related ideas can be demonstrated. 5. Development of appropriate measures of patient experience that can be used as part of the quality outcome measures. 6. Cost evaluation/effectiveness studies carried out over time that includes national quality outcome indicators and valid measures of patient experience. 7. The importance of whole system working needs to be identified in the planning of services. 8. Research into the role of the health visitor in chronic disease management within a public health model

A Handbook of Data Collection Tools: Companion to "A Guide to Measuring Advocacy and Policy"

This handbook of data collection tools is intended to serve as a companion to A Guide to Measuring Advocacy and Policy. Organizational Research Services (ORS) developed this guide on behalf of the Annie E. Casey Foundation to support efforts to develop and implement an evaluation of advocacy and policy work. The companion handbook is dedicated to providing examples of practical tools and processes for collecting useful information from policy and advocacy efforts. Included within this handbook are a legislative process tracking log, a meeting observation checklist, a policy brief stakeholder survey, a policy tracking analysis tool, and a policy tracking form.This best practice provides an approach to measure advocacy and policy change efforts, starting with a theory of change, identifying outcome categories, and selecting practical approaches to measurement

Personalisation of context-aware solutions supporting asthma management

Personalisation of asthma management plans is important because asthma patients experience different triggers and symptoms as a result of the high heterogeneity level of the condition. Although this makes context-awareness suitable to support asthma management, existing context-aware solutions do not allow patients to personalise their management plans. This research proposes an approach to develop context-aware solutions allowing the personalisation of asthma management plans. It is derived on the basis of the literature review and a qualitative research that includes both asthma patients and carers. A prototype to illustrate the application of the approach is demonstrated

Assessing Latino Caregiver’s Knowledge and Understanding of Medication Management for Children and the Use of Health Technology to Gather Information

For people with low literacy who come from other cultures, accessing, understanding and using the United States healthcare system is challenging. Existing literature states that low parental health literacy among the Latino population is related to poor health outcomes for their children. This project explores Latino caregiver’s health practices and the possible uses of technology, specifically Smartphone applications (apps), to provide information about their child’s health care. The project included two focus group sessions (one in English, one in Spanish) with a total of 17 caregivers who attend a Head Start Program. The focus groups addressed two aims: (1) to understand caregivers\u27 current knowledge and issues concerning medication management for their children; (2) to assess the current use and effectiveness of existing technology by caregivers to obtain health information. The findings suggest that caregivers are interested and could benefit from a culturally appropriate and linguistically responsive Smartphone health app. While both focus groups discussed features they would like to see in a health app, the Spanish-speaking group emphasized their personal experiences with access, communication with providers, and challenges with navigating the health care system. Caregivers identified a lack of trust that they have with the medical system which suggests the need for education of health care providers to improve their communication skills and understanding of the needs of the Latino population

Quality of Health Care for Children and Adolescents: A Chartbook

Contains 40 charts and analyses that represent the current state of pediatric health care. Provides practical guidance and recommendations for policymakers, health care professionals, and patient advocates

MaineCare Stage A Health Homes Year 1 Report: Implementation Findings and Baseline Analysis

In January 2013, Maine established Health Homes under federal authority pursuant to Section 2703 of the Affordable Care Act to improve care coordination for MaineCare members with chronic conditions. Stage A of the Health Homes initiative focuses on members with complex medical chronic conditions. Stage B, planned for early 2014, will focus on persons with severe and persistent mental health conditions and children with serious emotional disturbances. The Stage A demonstration builds off the State’s existing Maine multi-payer Patient Centered Medical Home (PCMH) Pilot project and Maine’s Medicare Advanced Primary Care Practice (MAPCP) Demonstration by providing add-on payments to primary care practices and strengthening the community care team (CCT) model to provide care management and social support services to high-need MaineCare patients. As part of the initiative, MaineCare commissioned the Muskie School of Public Service to evaluate this new model of care. This report presents evaluation findings after the first year of Stage A implementation and provides preliminary baseline data on quality, use and cost of care for eligible MaineCare members in Health Homes (HH) relative to a comparison group that will form the basis for assessing overall impact at the close of the two years of enhanced federal match under the initiative. The report is divided into two parts. Part I focuses on how the model has been implemented in Year 1 including the number of practices and members that are participating and how practices and Community Care Teams (CCTs) have enhanced service delivery based on program data and qualitative interviews with participating practices, CCTs and stakeholders. Part II presents baseline data from 2011, prior to the beginning of the Stage A, comparing the quality, utilization and cost of services for MaineCare members that are participating in Health Homes with members with similar HH eligible conditions that did not enroll in Health Homes. Preliminary baseline data included in this report will be updated and used in the final report to assess how quality, use and cost of MaineCare services changed over time in each of these groups, to evaluate the impact of the intervention

ADAPT: Approach to Develop context-Aware solutions for Personalised asthma managemenT

The creation of sensors allowing the collection of a high amount of data has been possible thanks to the evolution of information and communication technology. These data must be properly interpreted to deliver meaningful information and services. Context-aware reasoning plays an important role in this task, and it is considered as a hot topic to study in the development of solutions that can be categorised under the scope of Intelligent Environments. This research work studies the use of context-aware reasoning as a tool to provide support in the asthma management process. The contribution of this study is presented as the Approach to Develop context-Aware solutions for Personalised asthma managemenT (ADAPT), which can be used as a guideline to create solutions supporting asthma management in a personalised way. ADAPT proposes context-aware reasoning as an appropriate tool to achieve the personalisation that is required to address the heterogeneity of asthma. This heterogeneity makes people with asthma have different triggers provoking their exacerbations and to experience different symptoms when their exacerbations occur, which is considered as the most challenging characteristic of the condition when it comes to implementing asthma treatments. ADAPT context dimensions are the main contribution of the research work as they directly address the heterogeneity of asthma management by allowing the development of preventive and reactive features that can be customised depending on the characteristics of a person with asthma. The approach also provides support to people not knowing their triggers properly through case-based reasoning, and includes virtual assistant as a complementing technology supporting asthma management. The comprehensive nature of ADAPT motivates the study of the interaction between context-aware reasoning and case-based reasoning in Intelligent Environments, which is also reported as a key contribution of the research work. The inclusion of people with asthma, carers and experts in respiratory conditions in the experiments of the research project was possible to achieve thanks to the collaboration formed with Asthma UK

Activity Theory Analysis of Heart Failure Self-Care

The management of chronic health conditions such as heart failure is a complex process emerging from the activity of a network of individuals and artifacts. This article presents an Activity Theory-based secondary analysis of data from a geriatric heart failure management study. Twenty-one patients' interviews and clinic visit observations were analyzed to uncover eight configurations of roles and activities involving patients, clinicians, and others in the sociotechnical network. For each configuration or activity pattern, we identify points of tension and propose guidelines for developing interventions for future computer-supported healthcare systems

Context-aware solutions for asthma condition management: a survey

The evolution of information technology has allowed the development of ubiquitous, user-centred, and context-aware solutions. This article considers existing context-aware systems supporting asthma management with the aim of describing their main benefits and opportunities for improvement. To achieve this, the main concepts related to asthma and context awareness are explained before describing and analysing the existing context-aware systems aiding asthma. The survey shows that the concept of personalisation is the key when developing context-aware solutions supporting asthma management because of the high level of heterogeneity of this condition. Hence, the benefits and challenges of context-aware systems supporting asthma management are strongly linked to contextual Just-In-Time information of internal and external factors related to a person and the heterogeneity it represents

Designing an educational interactive eBook for newly diagnosed children with type 1 diabetes: Mapping a new design space

peer-reviewedIn this paper, we report on a project investigating the role of Interactive Technologies (IT) and participatory design methods in supporting self-care practices in paediatric Type 1 Diabetes Mellitus (T1DM). In particular, we discuss the design of an educational interactive eBook to support newly diagnosed children and their families in learning about effective management outside the clinical–medical consultation. We use our design as an illustration of a potential new design space for type 1 diabetes learning resources. We map this space by identifying a series of oppositions that helps us to explore new design assumptions that could better support the education of newly diagnosed children and families: learning alone vs learning together, medical vs patient perspective, prescriptive language vs narratives and social stories, and static vs interactive educational contents. Through a discussion of these shifting of points of focus in the design of educational products in T1DM, we hope to open up new opportunities to rethink the design of tools to support the education of paediatric diabetes (and possibly of other chronic diseases and conditions)