| Abstract | Background
In 2000, the SDO commissioned a Scoping Exercise on Continuity of Care following their initial Listening Exercise among managers and consumers. The aim was to describe and limit the concept, and to summarise previous research and suggest priority areas. The scoping report recommended that research needed to focus on continuity from the patient’s perspective and that a much clearer definition of continuity was required.
After considering the scoping report the SDO commissioned a major programme of research. This included six major empirical projects of three to six year duration1 as well as several brief reviews. The six empirical projects covered the following topic areas: diabetes (type 2), primary care, cancer, cross-boundary issues (exemplified by learning difficulty and stroke), acute severe stroke (main stroke) and severe mental illness (mental health). (The abbreviations in italics are the shortened project titles used throughout this report). By 2005 the SDO needed to evaluate this programme and it commissioned the present review to synthesise and interpret findings to date. This project ran for six months from June 2006.
The Canadian Health Services Research Foundation also commissioned a programme of research into continuity of care over a similar time period (1999-2005). This comprised over 70 projects, generally smaller but covering a wider range of topics. We welcomed the opportunity to link up with the evaluation of the Canadian programme. Method
The multidisciplinary project team met monthly. One member (JH) was also the evaluator of the Canadian programme. Two members of the group (GKF & MW) collected most of the ‘data’ – this was from project reports, publications (where available) and from site visits to the research teams of the major projects.
While the original intention was a formal synthesis of project outputs with the aim of generating findings common to all projects, this proved impracticable for two reasons: first, three projects were incomplete, second, methods and contexts were so heterogeneous that formal data synthesis techniques could not be applied. Instead we conducted a series of case studies and synthesised the narrative findings using established methods. Subsequent interaction with the research teams encouraged us to focus particularly on issues of measurement of continuity arising in the projects. Findings
A continuity research programme of unprecedented scope
This programme has been the largest and longest of its kind, with particular focus on the experiences of patients and their carers. Each project has seen substantial user involvement in its design and execution. Continuity of care is a phenomenon experienced over time – it is in essence longitudinal. It therefore particularly needs study over the longer time periods that this farsighted programme has enabled. Unfortunately one paradox is that these longer term findings are not yet available for us to report and comment on! Concept and definition
The projects have developed a range of new measurement scales for continuity as experienced by patients and carers. As a result continuity was conceptualised broadly, to include other aspects of quality of care such as access and availability of services. There has not been a particular convergence of definitions between projects. An important new finding has been the extension of the concept of informational continuity to include information transfer from professionals to patients. Some professional aspects of informational and management continuity were clearly less salient to patients. Thus both groups must be sampled to gather data as a basis for improving and monitoring services.
The cancer project developed the concept of continuity as an outcome rather than a process. This is useful because it improves our understanding of what patients are looking for but it does not directly help providers identify the process changes that are needed to improve care. User and carer experience
The experience of continuity was often estimated as good in these projects. But each area revealed minorities with poorer experience. A common thread across many projects was the disadvantage of vulnerable groups who were less able to negotiate better continuity or other aspects of better care for themselves. In the case of cancer this appeared to be those who were either too ill (therefore unable) or else reluctant (due to cultural, class or language barriers) to be more directly involved as ‘partners’ in their care. In primary care it could take great persistence to achieve continuity with the patient’s chosen doctor.
For people with learning disability struggling with the transition from school to adult life, problems of continuity across health, social care and educational boundaries were far more common. This appears to relate to a combination of shortage of resources (services) and low policy priority on the one hand, with years of ‘organisational turbulence’ on the other. The creation of new coordinating structures does not necessarily compensate for lack of resources and brings a heavy cost in transitional disruption. Effects of continuity
Few of these results were available at the time of this report, but the diabetes project reinforces evidence that both relationship and management continuity are associated with satisfaction for both patients and staff. On the other hand there was no association between either type of continuity and improved clinical indicators of diabetes (lower blood pressure or blood sugar levels). This could be because services respond to deteriorating diabetes by offering better continuity.
In the case of cancer, high experienced continuity was associated with lower physical and psychological health needs, better quality of life and less psychological distress at each subsequent follow-up point over the 12 month study. Enhancing and frustrating continuity
The diabetes project found best continuity for primary care patients when care was led and co-ordinated by a named lead clinician in their practice. Continuity was assessed as less good without this lead person, and least good when care was led from secondary care.
Both in primary care and in mental health, users voiced a need for adaptability and flexibility in access to services. In the case of cancer, good planning at the initial stages seems vital. The project team are engaged in a second phase of their study planning to test an intervention designed to improve the effectiveness of initial multidisciplinary team planning meetings by helping them be more sensitive to individual patients’ needs, and ability and willingness to be involved in various aspects of their care. Insights from the parallel Canadian programme
This review covered 34 continuity studies. Five focussed on the concept of continuity from the patient perspective. As with the SDO projects, patients emphasised extra dimensions of care quality beyond strict continuity: access to services, and the interpersonal and perceived technical skills of providers. Patients were keen to be participants and saw their continuity role as complying with treatment and using appropriate self management – but also in advocating for access to recommended services. Flexibility of access was again emphasised to facilitate the achievement of desired relationship and management continuity.
Systems to facilitate information transfer were found to be necessary but not sufficient in improving care delivery. There was some evidence of specialist care savings being partially off-set by extra community expenditure. The most successful interventions were accompanied by improvements in quality of life and general functioning for patients with mental illness. Conclusion
The term continuity of care has a number of meanings and therefore needs explaining or qualifying whenever it is used. It applies to individual patients (rather than groups) over time. We now distinguish three major types –management, informational and relationship. Management continuity involves the communication of both facts and judgements across team, institutional and professional boundaries, and between professionals and patients. Informational continuity concerns the timely availability of relevant information. Relationship continuity means a therapeutic relationship of the patient with one or more health professionals over time.
Access is closely linked with continuity and patients may have to trade off one for the other. This is particularly true for patients in primary care, where they have significant control over appointment making. In other settings, patients have less control over access. Perceived professional quality, both interpersonal and technical, is a vital influence on patients’ choices about access and relationship continuity, so access needs to be assessed alongside continuity when reviewing a service.
The SDO programme, together with the parallel Canadian one, has added much to our understanding of the working of different types of continuity and confirmed that better continuity of both management and relationship are associated with better satisfaction for patients and staff, and with just a few improved outcomes.
More evidence is still needed on the causal links between continuity, particularly relationship continuity and better outcomes. This needs evidence from carefully designed trials.
These projects have greatly extended our understanding of continuity as experienced by patients and by their carers. There is strong support here for the concept of patients as partners in their own care and for professionals to devote more effort in working with patients rather than delivering a service to them. At the same time important groups of patients are more vulnerable and need extra professional help to achieve better continuity on the way to better care. In particular they need flexible access systems and help in negotiating these, together with adequate resources to deliver the advertised service.
While these projects had some success at identifying vulnerable groups it is likely that these were underrepresented. Future studies need more specific focus and original approaches.
All these projects except primary care focussed on single, if serious,
problems. Increasingly patients have co-morbidities and future work needs to focus on the role of various types of continuity in providing better care for them. |
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