The nursing contribution to chronic disease management: A discussion paper

2.1. The review 

The theoretical discourse developed in this paper is derived from an integrated literature review. The review sought to define the nature of the nursing contribution (conceptualisation) to CDM and to provide some assessment of the impact or effect of that contribution (effectiveness). Due to the complexity of the review question and the need for a focused exploration of the nursing contribution to CDM in a range of different clinical settings, the review focused on three disorders: diabetes; COPD; and MS. These disorders fulfil Kessner and Kalk's (1973) criteria for selecting tracer conditions which are: easy to define; amenable to improvement (there are clear care objectives for each disorder); there are criteria for distinguishing between good and bad care (each disorder has nationally identified protocols to determine the quality of both care processes and outcomes); and non-medical factors can be identified (each disorder is associated with a range of psychosocial effects). While there is a degree of commonality and some interaction between these disorders, there are also contrasts between them in relation to: the needs of the user populations; the way in which CDM has developed (e.g. high and low levels of clinical infrastructure); clinical contexts (e.g. primary, secondary and tertiary care); the roles undertaken by nurses (e.g. different grades and levels of specialisation, including doctor substitution models); and the levels of cross-boundary working.

The review was guided by an initial conceptual framework of the contribution of nurses to CDM developed from a previous review regarding nurses in child health care (Forbes et al., 2007). The framework proposed two distinct but integrated domains for the nursing contribution: the contribution of nurses to care delivery (assessment, health promotion and clinical interventions); and the contribution of nurses to health care organisation. The former relates to the contribution at the patient level and the latter at the system level.

The three stages of the review method were:

2.2. Overview of included studies 

A total of 160 items (papers, reports) were included in the review. Most items were evaluative in nature (n=76, 48%) and included audit studies and service evaluations. There were few high quality randomised controlled trials (assessed using CASP standards) with the overall level of evidence being weak. Most of the material was from the UK reflecting the research funding by the UK government to inform health care policy. While this is acknowledged as a potential bias, 41% (n=65) of the material was from non-UK sources (mainly Europe and North America).

3.1. Patient activities 

The patient activities were divided into assessment, health promotion and clinical interventions, following the conceptual framework.

3.1.3. Clinical interventions 

Clinical interventions were organised into six groups of activities, which are detailed in Fig. 1.

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Fig. 1. Items (%)×intervention type×disorders.

There were many nursing activities aimed at self-care support and advice which included the appropriate, effective and safe use of health technologies. Self-care support also included initiatives to help minimise the impact of disease on patients’ daily lives and their capacity to participate in family and work life. For example, a MS specialist nurse and an OT established a management programme to help patients adapt to the common MS symptom of fatigue (Ward and Winters, 2003).

Health technology initiation activities included the prescription of new medicines and/or the initiation of other technologies such as aids and adaptations. One COPD example reported how the initiation of therapy could be integrated into comprehensive assessments and treatment algorithms (Barnett, 2003). Nurses were reported as managing the diverse range of complex technologies involved in CDM, for example: the intensive support required for insulin in diabetes; the management of disease modifying therapies in MS; and inhalers, oxygen therapy and more complex health technologies such as non-invasive ventilation in COPD. Nursing activities were not restricted to helping patients use such technologies and included moderating activities such as adjusting dosage and ensuring the efficient and safe use of technology.

Traditional nursing activities were the least evident area of intervention, with no examples in diabetes. In the COPD and MS reviews traditional nursing care was more important as patients experience deficits in activities of daily living. In MS there were examples of practices targeting specific nursing problems such as nutrition, constipation and continence. The relationship between nursing care and other problems was also highlighted with hygiene and pressure area care being important in the management of spasticity. In the COPD review there was a detailed account of nursing delivering personal care (bathing and dressing) which comprised a high level of skill (Lomborg and Kirkevold, 2005).

Psychological activities or at least the phrase psychological support or care which is somewhat ubiquitous in nursing accounts of CDM, often lacked detail. Psychological support is poorly defined and ranges from being in the same physical space as the patient (hand holding or presence) to formal psychological interventions (counselling; psycho-pharmacological interventions; exercise; relaxation; behaviour modification programmes; cognitive behavioural therapy; and self-efficacy training) (Ismail et al., 2004).

Case management activities were not well defined being implicit rather than explicit. There were distinctions both within and between the disorders in the way in which case management was used. In diabetes care case management activities comprised a care approach to therapy intensification and monitoring rather than a brokerage model. While in COPD and MS, the case management activity was more fragmented and determined by patient events or advancing disease. Thus, in some cases the case management was short term to resolve a problem such as a relapse or a hospital admission, while in others it was longer term with regular review to anticipate and prevent problems.

3.2. System level activities 

System level activities are those that impact upon the way that CDM is organised. The system is itself multi-faceted incorporating: the management of the patient population; the development and use of decision support systems; the integration of professionals and services; the place of care; quality assurance; and service development. System level nursing activities were categorised into 10 areas:

The principal activity related to workforce development was the education of other health professional and care workers (Deakin and Littley, 2001). This activity was common to all the reviews and was usually led by disorder specific specialist nurses. The education was both formal (teaching sessions) and informal (ad hoc or opportunistic education and information sharing).

Management of care system activities were focused on the appropriate admission, management and discharge of patients within the care system and included: finding patients (screening and case finding); assessing patients and admitting/entering them into the care system; organising and collating patient information; managing their progress in the care system (process and outcome); developing management plans; ensuring regular reviews; managing crises either unpredicted events or relapses; discharging patients from the care system; triage-controlling and rationing access to services; referring patients onto other care systems; monitoring the quality of the care provided; ensuring that patients understand their role in their own care and what is going on with their care management; and enforcing the care system (implementing guidelines and treatment protocols). At the system level these activities are not isolated but part of an overall system management function.

Managing health promoting systems comprised supporting the health promoting infrastructure and included: screening tests to identify those at risk of problems and then providing preventive advice (smoking and obesity); organising (recruiting patients, resourcing, planning and running) health education programmes; developing and distributing health education materials and information resources; and involving patients in the development of information and health education provision.

The review contained many cross-boundary activities across a number of interfaces:

Additionally cross-boundary working occurs at the interface with social welfare services, formal carers and continuing care settings although these were not well represented in the literature.

Service development was strongly represented in the review material. Activities included: work-force development (Chataway et al., 2006); providing more flexible and accessible services (creating new services or clinics to meet particular needs) (Day et al., 1992, Matheson and Porter, 2006); therapy innovations (introducing new procedures or approaches particularly education and psychological); developing information resources (leaflets, booklets web-based, contact lines) (Forbes et al., 2006); developing interfaces between services (creating shared initiatives or organising collaborative meetings) (Cavan et al., 2001); establishing patient databases (Forbes et al., 2003); developing new care systems (Johnson and Goyder, 2005); creating innovative communication methods (Johnson et al., 2001); and raising general awareness about the needs of the disorder (Shepherd et al., 2005).

Audit was a common activity both as a quality assurance method and as part of change management initiatives. In one example MS specialist nurses undertook an audit of waiting times for relapse admissions which revealed significant delays so that a MS nurse helpline was introduced to reduce waiting times and inappropriate admissions (Matheson and Porter, 2006). The care environment in CDM is diffuse, with patients undertaking much of the care themselves. Nursing activity was categorised into three areas relating to the care environment, namely: ensuring that patients have the appropriate information, resources and equipment to enable this care; supporting the care system environment, both real and virtual (ensuring that information is exchanged, appointments made and patients followed-up); and ensuring patient safety (medicines management, infection control); and equipment maintenance (efficacy and safety).

There were examples of nurses involving patients in their care through: the use of empowerment models of communication; equipping patients with self-care skills that they need to manage and adjust to life with their disease; and the involvement of patients in service organisation and planning. Facilitating access activities included: developing specific services to facilitate access for particular patient groups (e.g. older people, minority ethnic); active case finding of patients; and improving management processes to ensure rapid and timely access to services.

Nursing activities were also directed towards supporting the evidence-base for practice by: implementing evidence-based guidelines; policing evidence-based guidelines (making sure that others followed guidance); and transferring evidence to patients and other professionals through case support, education and example. It was noted, however, that most of the evidence-based practices were not derived from nursing knowledge but from medically constructed models drawing upon data from large clinical trials.

3.3. Technology and the nursing contribution to CDM 

There many examples in the review showing that nurses were using an increasing range of technologies to support their contribution both at the level of the system and to a limited extent at the level of the patient through the use of patient-centred technologies. In the management and analysis of information nurses use both computerised and non-computerised systems to assess and monitor patient performance. These technologies were largely based on defined protocols that collated patient data to give individual and group level summaries of risk (clinical factors), service use or progress (e.g. eye screening uptake), and follow-up priority (targets and appointments) (Krein et al., 2004). There was also evidence that information management systems were being used to assess the quality of the care provided at the level of the individual practitioner, the care team and the overall service and in some instances these systems were used to determine financial rewards. There were a few examples of patient-centred technologies, such as self-monitoring technologies and patient-held records (Dijkstra et al., 2005). Technology was also impacting on patient interaction with nurses increasingly using different media to support and extend their interactions with patients (telephone, e-mail, text messaging) (Young et al., 2005). Regular communication is a central facet of CDM and these technologies were used to enable more flexible and extensive communication with patients so that patients no longer need to attend a specific location to have contact with the nurse reinforcing the increasing virtual nature of CDM (Alonso, 2004).

3.4. The impact of the nursing contribution 

The review also examined the evidence-base for the nursing contribution to CDM. While, the focus of this paper was on analysing the contribution rather than quantifying its effect, some of the observed impacts add to understanding of the nursing contribution to CDM. The material was examined to identify the effect of nursing roles and activities in relation to care structures, processes and outcomes. The limited evidence was examined thematically to identify the different areas of impact and is summarised in Table 1.

Table 1. Impact areas of nursing

	Structure
	Cross-boundary working
	Educating professionals
	Education non-professional carers
	Access and service use
	Developing care system
	Process
	Care experience
	Continuous support
	Event support
	Information support
	Assessment
	Outcomes
	Patient behaviours
	Quality of life
	Quality of life (disease)
	Quality of life (general health)
	Physical problems
	Psychological problems
	Social problems
	Mortality

In terms of service structures, the most common effect of nurses was on improving access to services, particularly for vulnerable or difficult to reach groups. For care processes, the strongest evidence of impact was on the ‘care experience’ with evidence suggesting beneficial effect on patient satisfaction and care quality. The strongest and most consistent (across disorders) impact relating to clinical outcome was on patient behaviour, particularly self-care behaviours. The data also suggested a generally positive impact on physical problems both in relation to disease outcomes and symptoms, although the effect on disease outcomes was only evident in the diabetes review. The lack of benefit in COPD and MS (particularly the latter) may reflect that patients’ problems generally worsen despite care input, while disease outcomes are much more modifiable in diabetes.

4.1. The nursing contribution to the patient 

While the clinical activities performed by nurses were separated out to identify them in the review, these activities are not performed in isolation rather they contributed to a more general function in CDM, namely, continuing management. This comprises management of three interrelated areas: (a) changes in the disease or patient (gradual or acute); (b) changes in therapy (and its effects); and (c) self-care behaviours (accommodating (a) and (b)). In performing this function the nurse acts as: an educator; an interpreter (helping the patients understand and find meaning in their disease and care); a monitor (reviewing changes and care effects); a modulator (changing or adjusting therapies); and as a referrer (passing patients onto other professionals and services where needs demand). Fig. 2 details a model illustrating how nursing manages the interaction between the changing disease, therapy adjustment and self-care behaviour and highlights the relationship between the nurse and other professionals, in either onward referral or joint consultation as part of the management process.

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Fig. 2. Contribution of nurse to continuing management.

In managing the relationship between the changing disease state and the therapy the nurse functions either as the direct adjuster of these therapies (patient or nurse identifies significant change and tells patient what to do) or as an educator (nurse educates patient so that they can adjust therapy for themselves). However, the continuously evolving nature of CDM requires that the care system anticipate or has the capacity to manage these fluctuations so that the care evolves with the patient's needs reflecting the different natural histories of the diseases and the differences in care pathways organisation. Two distinct patterns were observed. In diabetes care evolution was defined in terms of gradualism (the nursing approach is consistent while moving with the changing patient state). While in MS the pattern was defined as ‘punctuated equilibrium’ (the nursing approach and roles change with the patient state). In this latter model care evolves in steps: manage diagnosis; modify the disease; solve acute problems; prevent/manage symptoms; then manage disability; and finally end-stage disease care.

4.2. The nursing contribution to the care system 

The nursing activities contribute across the horizontal and vertical axes of CDM. Fig. 3 details a model illustrating how and where nursing activities are located within CDM. The model shows the pervasiveness of nursing within the overall structure of CDM highlighting how nursing is important to sustaining the care structures within CDM with nursing as part of that structure. The contribution of nursing throughout the patient journey (in either the gradual or punctuated forms) across the vertical system of care is also expressed in the model. Providing patient involvement mechanisms is another facet of the contribution (through both structural and individual mechanisms). The provision of structure within CDM systems is an important function of nursing as the care setting in CDM is increasingly virtual (centred on relationship between the patient and the care system) rather than place centred (hospital ward or clinic). Traditionally the care organisation was defined by the activity (the hernia repair) or the building (the emergency department) with the place and time of care being clearly defined. In CDM the place and time are more complex, events or activities are continuous with care occurring in many different settings. It is important that both patients and professionals can locate themselves within this virtual world. It is also important that someone maintains this virtual place of care and ensures that the environment (the care systems and the relationships between patients and professionals) is fit for purpose and delivers effective CDM. In many of the examples included in the review the nurse acted as ‘place’ providing the care interface or the structure for the organisation of care. For example, a key function of the MS nurse was to be the first point of contact with patients during crises and to provide them with information that connected them to the care system (Forbes et al., 2006).

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Fig. 3. Contribution of nurse within the CDM system.

However, this function of nursing is often poorly articulated. The review found no explicit acknowledgement of this function rather it was implicit, hidden and silent. While this may be a failure of the review, it is clearly not a commonly articulated aspect of the nursing contribution indicating the need to develop principles to guide this function. In many ways this overarching perspective on the care context is what defines nursing. The Nightingale ward, for example, was a model designed to ensure almost total control over the care system. It was established to give nurses an overview of the patient in the hospital care system and identify those in more acute need. The patient's progress in achieving a stable condition was marked by progression further away from the nursing station (gaze) to the end of the ward prior to discharge. In addition to the nurses being able to see the patient, the patient was able to see the nurse. In the absence of the traditional place there is a need to establish models to guide the nursing gaze within the complex and diffuse world of CDM and to enable nurses to examine care systems analytically thereby contributing specific expertise in refining and improving the care system. The adoption of standardised models would also ensure that approaches were transferable and contributed to a common knowledge.

4.3. The impact of technology on the nursing contribution 

While the review identified examples of nurses using and developing technologies to support their contribution to CDM, the relationship between nursing and those technologies was varied. The review identified four models expressing the relationship between nursing and technology:

Models 1 and 2 were common with only a few examples of Models 3 and 4. The models are not mutually exclusive with the nurse functioning within all the models. In Model 1 nurses are alienated from the overall purpose of the system they are passive (responding to developments by others) rather than active (challenging, questioning and contributing knowledge) in developing and managing the care system. Importantly these models may define professional power so that, unless nurses engage themselves at all these levels, they will be (remain) subordinate within the application of clinical activity.

4.4. The evidence for the nursing contribution to CDM 

Overall the level of evidence supporting the nursing contribution in CDM was of a very poor quality. It was particularly notable that, with a few exceptions (such as telephone counselling and self-efficacy training), there were very few high quality evaluations of specific activities or interventions. Most of the examples were broad descriptions of roles rather than detailed examinations of specific activities. Studies comparing nurses with doctors where the desired outcome is no difference (equivalence) added to the confusion. In these role evaluation studies nursing was presented as a ‘black box’ (with minimal details of the activities performed) and failed to provide any enduring account of what nurses should do to improve the care that they provide in relation to specific patient outcomes. It seems that the nursing focus (and the care provided) in CDM is increasingly being defined by external evidence from large clinical trials of pharmaceutical interventions. The nursing workforce is being used as a delivery mechanism, implementing evidence generated outside of the profession. While on one level this translation of evidence into the care experience of patients is an important function; on another it further evidence of the passivity of nursing in shaping the care activities and systems that they operate within.