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

Managing behavioural and psychological symptoms in community dwelling older people with dementia:1. A systematic review of the effectiveness of interventions

© 2018 The Author(s) This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence CC BY 4.0 (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.Background: Two-thirds of people living with dementia live at home in the UK and many experience distressing behavioural and psychological symptoms. This systematic review evaluates the effectiveness of non-pharmacological interventions for behavioural and psychological symptoms among community-dwelling people living with dementia. Methods: This two-stage review undertook an initial mapping of the literature followed by a systematic review of relevant randomised controlled trials. We searched electronic databases for pertinent studies reporting outcomes from interventions from January 2000 to March 2015 and updated searches in October 2016. We included studies that considered behavioural and psychological symptom management for older people living with dementia who live at home and excluded studies conducted in long-term care settings. This paper presents findings from a narrative synthesis of 48 randomised controlled trials evaluating interventions for people living with dementia alone, family carers alone and patient-carer dyads. Results: We retrieved 17,871 de-duplicated records and screened them for potential inclusion. Evidence from 48 randomised controlled trials suggests that family carer training and educational programmes that target problem behaviours and potential triggers can improve outcomes. Nurses and occupational therapists appear to help people with dementia with behavioural and psychological symptoms, but professional comparisons are lacking and there is no shared language about or understanding of behavioural and psychological symptoms amongst professionals, or between professionals and family carers. Conclusions: Future research should focus on the effectiveness of components of multi-faceted programmes and their cost effectiveness and include qualitative data to better target interventions for behavioural and psychological symptoms. It is important to consider family carer readiness to use non-pharmacological strategies and to develop a shared language about the inherent needs and communications of behavioural and psychological symptoms.Peer reviewe

‘’It just happens’. Care home residents’ experiences and expectations of accessing GP care.

Background: Care homes provide personal care and support for older people who can no longer be supported in the community. As part of a larger study of integrated working between the NHS and care homes we asked older people how they accessed health care services. Our aim was to understand how older people resident in care homes access health services using the Andersen model of health care access. Methods: Case studies were conducted in six care homes with different socio-economic characteristics, size and ownership in three study sites. Residents in all care homes with capacity to participate were eligible for the study. Interviews explored how residents accessed NHS professionals. The Andersen model of health seeking behaviour was our analytic framework. Findings: Thirty-five participants were interviewed with an average of 4 different conditions. Expectations of their health and the effectiveness of services to mitigate their problems were low. Enabling factors were the use of intermediaries (usually staff, but also relatives) to seek access. Residents expected that care home staff would monitor changes in their health and seek appropriate help unprompted. Conclusions: Care home residents may normalise their health care needs and frame services as unable to remediate these which may combine to disincline older care home residents to seek care. Care access was enabled using intermediaries -either staff or relatives-and the expectation that staff would proactively seek care when they observed new/changed needs. Residents may over-estimate the health-related knowledge of care home staff and their ability to initiate referrals to NHS professionals.Peer reviewedFinal Accepted Versio

Evaluation Of Pilgrims Hospices Rapid Response Hospice At Home Service: Summary of findings March 2015

When faced with a life-limiting illness, most people say they would prefer to spend the end of their lives and die at home. However, we know that about half the people with cancer or long-term illnesses still die in hospital. Fewer than a quarter die in their own home. Patients are often admitted to hospital because of a crisis such as uncontrolled symptoms, carer fear or stress, or not having medication available when needed. Community based palliative care teams can help in such situations. In 2008 Pilgrims Hospices commissioned a review of the literature to understand what kinds of home care services provide the most benefit to patients at the end of their lives and their families. Though good quality evidence was scarce, the findings of the review suggested that successful services are able to respond rapidly, focus on supporting family carers at home and are available 24 hours a day seven days a week. Following these conclusions, Pilgrims Hospices developed the Rapid Response Hospice at Home service (Hospice at Home) to support people who are at the end of life and would like to die at home. The Hospice at Home service operates in addition to established hospice community services and is staffed by healthcare assistants (HCAs) who have been trained at the hospice. The HCAs are available day and night at four hours' notice to support patients in the last days of their lives or when they experience a crisis

Models of inter professional working for older people living at home: a survey and review of the local strategies of English health and social care statutory organisations.

BACKGROUND: Most services provided by health and social care organisations for older people living at home rely on interprofessional working (IPW). Although there is research investigating what supports and inhibits how professionals work together, less is known about how different service models deliver care to older people and how effectiveness is measured. The aim of this study was to describe how IPW for older people living at home is delivered, enacted and evaluated in England. METHOD: An online survey of health and social care managers across England directly involved in providing services to older people, and a review of local strategies for older people services produced by primary care organisations and local government adult services organisations in England. RESULTS: The online survey achieved a 31% response rate and search strategies identified 50 local strategies that addressed IPW for older people living at home across health and social care organisations. IPW definitions varied, but there was an internal consistency of language informed by budgeting and organisation specific definitions of IPW. Community Services for Older People, Intermediate Care and Re-enablement (rehabilitation) Teams were the services most frequently identified as involving IPW. Other IPW services identified were problem or disease specific and reflected issues highlighted in local strategies. There was limited agreement about what interventions or strategies supported the process of IPW. Older people and their carers were not reported to be involved in the evaluation of the services they received and it was unclear how organisations and managers judged the effectiveness of IPW, particularly for services that had an open-ended commitment to the care of older people. CONCLUSION: Health and social care organisations and their managers recognise the value and importance of IPW. There is a theoretical literature on what supports IPW and what it can achieve. The need for precision may not be so necessary for the terms used to describe IPW. However, there is a need for shared identification of both user/patient outcomes that arise from IPW and greater understanding of what kind of model of IPW achieves what kind of outcomes for older people living at home

The Influence of Affect on HPV Vaccine Decision Making in an HPV Vaccine Naïve College Student Population

The HPV vaccine is recommended for all adolescents starting at age 11, but coverage is low, especially in the young adult population. The CDC is prioritizing catch-up vaccination and has expanded recommendations for all young adults to age 26. College students may be ideal targets for HPV vaccine interventions as they typically have on-site clinics that offer prevention services and students are in the position to make decisions about their own healthcare. We examined the risk perceptions of 101 HPV vaccine-naïve college students, both in terms of risk cognition (beliefs about susceptibility to HPV-related cancers and genital warts) and affect (worry and fear regarding HPV-related health outcomes) as they relate to HPV vaccine intentions. Participants completed an online survey, reporting absolute and comparative risk perceptions for HPV-related cancers/genital warts, fear and worry related to getting HPV-related cancer and/or genital warts, desire for positive emotions, affective associations with the HPV vaccine, and intentions to get the HPV vaccine. More fear/worry about vaccination was directly associated with increased vaccine intentions. The perceived risk to intentions relation included an indirect effect via fear/worry. Desire for positive affect strengthened this relation. Positive affective associations with the HPV vaccine were also related to increased vaccine intentions. Given the public health impact of increasing HPV vaccine coverage for young adults, educational strategies framing the HPV vaccine positively while decreasing fear/worry related to negative health outcomes might increase interest in on-campus catch-up vaccination

Increasing access to CBT for psychosis patients: a feasibility, randomised controlled trial evaluating brief, targeted CBT for distressing voices delivered by assistant psychologists (GiVE2)

Background: The National Institute for Health and Care Excellence (NICE) recommends that Cognitive Behaviour Therapy for psychosis (CBTp) is offered to all patients with a psychosis diagnosis. However, only a minority of psychosis patients in England and Wales are offered CBTp. This is attributable, in part, to the resource-intensive nature of CBTp. One response to this problem has been the development of CBTp in brief formats that are targeted at a single symptom and the mechanisms that maintain distress. We have developed a brief form of CBTp for distressing voices and reported preliminary evidence for its effectiveness when delivered by highly trained therapists (clinical psychologists). This study will investigate the delivery of this intervention by a cost-effective workforce of assistant psychologists following a brief training and evaluate the acceptability and feasibility of conducting a future, definitive, randomised controlled trial (RCT). Methods: This is a feasibility study for a pragmatic, three-arm, parallel-group, superiority 1:1:1 RCT comparing a Guided self-help CBT intervention for voices and treatment as usual (GiVE) to Supportive Counselling and treatment as usual (SC) to treatment as usual alone (TAU), recruiting across two sites, with blinded post-treatment and follow-up assessments. A process evaluation will quantitatively and qualitatively explore stakeholder experience. Discussion: Expected outcomes will include an assessment of the feasibility of conducting a definitive RCT, and data to inform the calculation of its sample size. If evidence from a subsequent, fully powered RCT suggests that GiVE is clinically and cost-effective when delivered by briefly trained assistant psychologists, CBTp offered in these less resource-intensive forms has the potential to generate benefits for individual patients (reduced distress, enhanced recovery and enhanced quality of life), service-level patient benefit (increased access to evidence-based psychological therapies) and economic benefits to the NHS (in terms of the reduced use of mental health inpatient services). Trial registration: Current Controlled Trials, ISRCTN registration number: 16166070. Registered on 5 February 2019

A comparative case study of prescribing and non-prescribing physiotherapists and podiatrists

Background Increasing numbers of nurses, pharmacists and allied health professionals across the world have prescribing rights for medicines: over 90,000 of the eligible United Kingdom workforce are qualified as non-doctor prescribers. In order to inform future developments, it is important to understand the benefits and impact of prescribing by allied health professionals including physiotherapists and podiatrists.Aim: to compare outcomes of physiotherapist and podiatrist Independent Prescriber (PP- IP) patients with those of physiotherapist and podiatrist non-prescribers (PP-NPs). Outcome measures included patient satisfaction, ease of access to services, quality of life and cost implications.Design: a mixed method comparative case study Methods: Using mixed methods of data collection, outcomes were compared between 7 sites where care was provided from a PP-IP (3 podiatrist and 4 physiotherapist IPs) and 7 sites from a PP-NP (3 podiatrist and 4 physiotherapist NPs). Patients were followed up for 2 months (2015-2016). Results: 489 patients were recruited: n=243 IP sites, and n=246 NP sites. Independent prescribing was found to be highly acceptable, and equivalent in terms of quality of life (p>0.05) and patient satisfaction (p≤0.05) compared to care provided by NPs. PP-IP care delivery was found to be more resource intensive than PP-NP, with longer consultation duration for IPs (around 6.5 mins), and a higher proportion of physiotherapy patients discussed with medical colleagues (around 9.5 minutes). ConclusionThis study provides new knowledge that PP-IPs provide high levels of care. PP-IP care delivery was found to be more resource intensive. Further research is required to explore cost effectiveness. A more focussed exploration within each profession using targeted outcome measures would enable a more robust comparison, inform future developments around the world and help ensure non-doctor prescribing is recognised as an effective way to alleviate shortfalls in the global workforce

Service utilisation and family support of people with dementia: a cohort study in England.

Objectives This study aimed to compare costs of caring for people with dementia in domiciliary and residential settings, central England. Methods A cohort of people with dementia was recruited during a hospital stay 2008–2010. Data were collected by interview at baseline, and 6- and 12-month follow-up, covering living situation (own home with or without co-resident carer, care home); cognition, health status and functioning of person with dementia; carer stress; utilisation of health and social services; and informal (unpaid) caring input. Costs of formal services and informal caring (replacement cost method) were calculated. Costs of residential and domiciliary care packages were compared. Results Data for 109 people with dementia were collected at baseline; 95 (87.2%) entered hospital from their own homes. By 12 months, 40 (36.7%) had died and 85% of the survivors were living in care homes. Over one-half of people with dementia reported social care packages at baseline; those living alone had larger packages than those living with others. Median caring time for co-resident carers was 400 min/day and 10 h/week for non co-resident carers. Residential care was more costly than domiciliary social care for most people. When the value of informal caring was included, the total cost of domiciliary care was higher than residential care, but not significantly so. Carer stress reduced significantly after the person with dementia entered a care home. Conclusions Caring for people with dementia at home may be more expensive, and more stressful for carers, than care in residential settings

Managing behavioural and psychological symptoms in people with dementia and their carers living at home/community- A mixed methods evidence synthesis for non-pharmacological interventions

Plain English Summary Background Two-thirds of people with dementia live at home and many experience distressing symptoms such as aggression, wandering, agitation, emotional problems, known as behavioural and psychological symptoms of dementia (BPSD), which result in poor outcomes. We aimed to combine evidence from various sources to find out what types of non-drug based interventions might be helpful for people with dementia and their carers. We also conducted focus groups (FG) and interviews with service users and providers around managing BPSD