Objective To determine the effectiveness of an intervention to enhance self management support for patients with chronic conditions in UK primary care.
Design Pragmatic, two arm, cluster randomised controlled trial.
Setting General practices, serving a population in northwest England with high levels of deprivation.
Participants 5599 patients with a diagnosis of diabetes (n=2546), chronic obstructive pulmonary disease (n=1634), and irritable bowel syndrome (n=1419) from 43 practices (19 intervention and 22 control practices).
Intervention Practice level training in a whole systems approach to self management support. Practices were trained to use a range of resources: a tool to assess the support needs of patients, guidebooks on self management, and a web based directory of local self management resources. Training facilitators were employed by the health management organisation.
Main outcome measures Primary outcomes were shared decision making, self efficacy, and generic health related quality of life measured at 12 months. Secondary outcomes were general health, social or role limitations, energy and vitality, psychological wellbeing, self care activity, and enablement.
Results We randomised 44 practices and recruited 5599 patients, representing 43% of the eligible population on the practice lists. 4533 patients (81.0%) completed the six month follow-up and 4076 (72.8%) the 12 month follow-up. No statistically significant differences were found between patients attending trained practices and those attending control practices on any of the primary or secondary outcomes. All effect size estimates were well below the prespecified threshold of clinically important difference.
Conclusions An intervention to enhance self management support in routine primary care did not add noticeable value to existing care for long term conditions. The active components required for effective self management support need to be better understood, both within primary care and in patients’ everyday lives.
Trial registration Current Controlled Trials ISRCTN90940049.
Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support.
Primary care is recognised to have an important role in the delivery of care for people with chronic kidney disease (CKD). However, there is evidence that CKD management is currently suboptimal, with a range of practitioner concerns about its management.
To explore processes underpinning the implementation of CKD management in primary care.
Design and setting
Qualitative study in general practices participating in a chronic kidney disease collaborative undertaken as part of the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for Greater Manchester.
Semi-structured interviews were conducted with GPs and practice nurses (n = 21). Normalisation Process Theory provided a framework for generation and analysis of the data.
A predominant theme was anxiety about the disclosure of early-stage CKD with patients. The tensions experienced related to identifying and discussing CKD in older people and patients with stage 3A, embedding early-stage CKD within vascular care, and the distribution of work within the practice team. Participants provided accounts of work undertaken to resolve the difficulties encountered, with efforts having tended to focus on reassuring patients. Analysis also highlighted how anxiety surrounding disclosure influenced, and was shaped by, the organisation of care for people with CKD and associated long-term conditions.
Offering reassurance alone may be of limited benefit, and current management of early-stage CKD in primary care may miss opportunities to address susceptibility to kidney injury, improve self-management of vascular conditions, and improve the management of multimorbidity.
doctor–patient relations; kidney disease; chronic; normalisation process theory; primary care
Improving the quality of care for people with vascular disease is a key priority. Chronic kidney disease (CKD) has recently been included as a target condition for general practices to add to registers of chronic conditions as part of the Quality and Outcome Framework. This paper outlines the implementation and evaluation of a self-management intervention involving an information guidebook, tailored access to local resources and telephone support for people with stage 3 chronic kidney disease.
The study involves a multi-site, longitudinal patient-level randomized controlled trial. The study will evaluate the clinical use and cost-effectiveness of a complex self-management intervention for people with stage 3 chronic kidney disease in terms of self-management capacity, health-related quality of life and blood pressure control compared to care as usual. We describe the methods of the patient-level randomized controlled trial.
The management of chronic kidney disease is a developing area of research. The BRinging Information and Guided Help Together (BRIGHT) trial aims to provide evidence that a complementary package of support for people with vascular disease that targets both clinical and social need broadens the opportunities of self-management support by addressing problems related to social disadvantage.
Trial registration reference: ISRCTN45433299
Vascular disease; Chronic kidney disease; Self-management; Randomized controlled trial; Social disadvantage; Social networks; Social prescribing; Minimally disruptive medicine
The prevalence and impact of long term conditions continues to rise. Care planning for people with long term conditions has been a policy priority in England for chronic disease management. However, it is not clear how care planning is currently understood, translated and implemented in primary care. This study explores experience of care planning in patients with long term conditions in three areas in England.
We conducted semi-structured interviews with 23 predominantly elderly patients with multiple long term conditions. The interviews were designed to explore variations in and emergent experiences of care planning. Qualitative analysis of interview transcripts involved reflexively coding and re-coding data into categories and themes.
No participants reported experiencing explicit care planning discussions or receiving written documentation setting out a negotiated care plan and they were unfamiliar with the term ‘care planning’. However, most described some components of care planning which occurred over a number of contacts with health care professionals which we term”reactive” care planning. Here, key elements of care planning including goal setting and action planning were rare. Additionally, poor continuity and coordination of care, lack of time in consultations, and patient concerns about what was legitimate to discuss with the doctor were described.
Amongst this population, elements of care planning were present in their accounts, but a structured, comprehensive process and consequent written record (as outlined in English Department of Health policy) was not evident. Further research needs to explore the advantages and disadvantages of different approaches to care planning for different patient groups.
Aged; Chronic disease; Chronic illness; Patient care planning; Primary health care
Perfluorocarbon nanoemulsions can deliver lipophilic therapeutic agents to solid tumors and simultaneously provide for monitoring nanocarrier biodistribution via ultrasonography and/or 19F MRI. In the first generation of block copolymer stabilized perfluorocarbon nanoemulsions, perfluoropentane (PFP) was used as the droplet forming compound. Although manifesting excellent therapeutic and ultrasound imaging properties, PFP nanoemulsions were unstable at storage, difficult to handle, and underwent hard to control phenomenon of irreversible droplet-to-bubble transition upon injection. To solve the above problems, perfluoro-15-crown-5-ether (PFCE) was used as a core forming compound in the second generation of block copolymer stabilized perfluorocarbon nanoemulsions. PFCE nanodroplets manifest both ultrasound and fluorine (19F) MR contrast properties, which allows using multimodal imaging and 19F MR spectroscopy for monitoring nanodroplet pharmacokinetics and biodistribution. In the present paper, acoustic, imaging, and therapeutic properties of unloaded and paclitaxel (PTX) loaded PFCE nanoemulsions are reported. As manifested by the 19F MR spectroscopy, PFCE nanodroplets are long circulating, with about 50% of the injected dose remaining in circulation two hours after the systemic injection. Sonication with 1-MHz therapeutic ultrasound triggered reversible droplet-to-bubble transition in PFCE nanoemulsions. Microbubbles formed by acoustic vaporization of nanodroplets underwent stable cavitation. The nanodroplet size (200 nm to 350 nm depending on a type of the shell and conditions of emulsification) as well as long residence in circulation favored their passive accumulation in tumor tissue that was confirmed by ultrasonography. In the breast and pancreatic cancer animal models, ultrasound-mediated therapy with paclitaxel-loaded PFCE nanoemulsions showed excellent therapeutic properties characterized by tumor regression and suppression of metastasis. Anticipated mechanisms of the observed effects are discussed.
Perfluorocarbon nanoemulsion; ultrasonography; fluorine MRS; fluorine MRI; ultrasound-mediated chemotherapy; pancreatic cancer
Patients with long-term conditions are increasingly the focus of quality improvement activities in health services to reduce the impact of these conditions on quality of life and to reduce the burden on care utilisation. There is significant interest in the potential for self-management support to improve health and reduce utilisation in these patient populations, but little consensus concerning the optimal model that would best provide such support. We describe the implementation and evaluation of self-management support through an evidence-based 'whole systems' model involving patient support, training for primary care teams, and service re-organisation, all integrated into routine delivery within primary care.
The evaluation involves a large-scale, multi-site study of the implementation, effectiveness, and cost-effectiveness of this model of self-management support using a cluster randomised controlled trial in patients with three long-term conditions of diabetes, chronic obstructive pulmonary disease (COPD), and irritable bowel syndrome (IBS). The outcome measures include healthcare utilisation and quality of life. We describe the methods of the cluster randomised trial.
If the 'whole systems' model proves effective and cost-effective, it will provide decision-makers with a model for the delivery of self-management support for populations with long-term conditions that can be implemented widely to maximise 'reach' across the wider patient population.
Trial registration number
Increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources in the management of a chronic condition. This forms the basis of a novel approach to understanding, designing, and implementing new forms of self-management support.
Drawing on evidence syntheses about social networks and capital and the role of information in self-management, we build on four conceptual approaches to inform the design of our research on the implementation of self-care support for people with long-term conditions. Our approach takes into consideration the form and content of social networks, notions of chronic illness work, normalisation process theory (NPT), and the whole systems informing self-management engagement (WISE) approach to self-care support.
The translation and implementation of a self-care agenda in contemporary health and social context needs to acknowledge and incorporate the resources and networks operating in patients' domestic and social environments and everyday lives. The latter compliments the focus on healthcare settings for developing and delivering self-care support by viewing communities and networks, as well as people suffering from long-term conditions, as a key means of support for managing long-term conditions. By focusing on patient work and social-network provision, our aim is to open up a second frontier in implementation research, to translate knowledge into better chronic illness management, and to shift the emphasis towards support that takes place outside formal health services.
Cavitation properties of block copolymer stabilized perfluoropentane nanoemulsions have been investigated. The nanoemulsions were stabilized by two biodegradable amphiphilic block copolymers differing in the structure of the hydrophobic block, poly(ethylene oxide)-co-poly(L-lactide) (PEG-PLLA) and poly(ethylene oxide)-co-polycaprolactone (PEG-PCL). Cavitation parameters were measured in liquid emulsions and gels as a function of ultrasound pressure for unfocused or focused 1-MHz ultrasound. Acoustic droplet vaporization preceded generation of acoustic cavitation in liquid matrices and gels. Both stable and inertial cavitation was observed for focused ultrasound while only stable cavitation was observed for unfocused ultrasound.
Nanoemulsions; Microbubbles; Acoustic droplet vaporization; Cavitation
Pancreatic ductal adenocarcinoma (PDA) is the fourth most common cause of cancer death in the United States, with a median survival time of only 3–6 months for forty percent of patients. Current treatments are ineffective and new PDA therapies are urgently needed. In this context, ultrasound-mediated chemotherapy by polymeric micelles and/or nanoemulsion/microbubble encapsulated drugs may offer an innovative approach to PDA treatment. PDA xenografts were orthotopically grown in the pancreas tails of nu/nu mice by surgical insertion of Red Fluorescence Protein (RFP)-transfected MiaPaCa-2 cells. Tumor growth was controlled by fluorescence imaging. Occasional sonographic measurements correlated well with the formal tumor tracking by red fluorescence. Tumor accumulation of paclitaxel-loaded nanoemulsion droplets and droplet-to-bubble transition under therapeutic ultrasound was monitored by diagnostic ultrasound imaging. MiaPaCa-2 tumors manifested resistance to treatment by Gemcitabine (GEM). This drug is the gold standard for PDA therapy. The GEM-resistant tumors proved sensitive to paclitaxel. Among six experimental groups studied, the strongest therapeutic effect was exerted by the following drug formulation: GEM + nanodroplet-encapsulated paclitaxel (nbGEN) combined with tumor-directed 1-MHz ultrasound that was applied for 30 s four to five hours after the systemic drug injection. Ultrasound-mediated PDA therapy by either micellar or nanoemulsion encapsulated paclitaxel resulted in substantial suppression of metastases and ascites suggesting ultrasound-enhanced killing of invasive cancerous cells. However, tumors relapsed after the completion of therapy, indicating survival of some tumor cells. The recurrent tumors manifested development of paclitaxel resistance. Ultrasound imaging suggested non-uniform distribution of nanodroplets in the tumor volume due to irregular vascularization, which may result in the development of zones with sub-therapeutic drug concentration. This is implicated as a possible cause of the resistance development, which may be pertinent to various modes of tumor nanotherapy.
Ultrasound imaging; Ultrasound-mediated chemotherapy; Pancreatic cancer; Paclitaxel; Polymeric micelles; Nanoemulsions; Microbubbles
Anne Kennedy, Anne Rogers, and Peter Bower argue that effective self care requires fundamental changes in professional attitudes and the way health care is delivered
The past decade has seen considerable interest in the development and evaluation of complex interventions to improve health. Such interventions can only have a significant impact on health and health care if they are shown to be effective when tested, are capable of being widely implemented and can be normalised into routine practice. To date, there is still a problematic gap between research and implementation. The Normalisation Process Theory (NPT) addresses the factors needed for successful implementation and integration of interventions into routine work (normalisation).
In this paper, we suggest that the NPT can act as a sensitising tool, enabling researchers to think through issues of implementation while designing a complex intervention and its evaluation. The need to ensure trial procedures that are feasible and compatible with clinical practice is not limited to trials of complex interventions, and NPT may improve trial design by highlighting potential problems with recruitment or data collection, as well as ensuring the intervention has good implementation potential.
The NPT is a new theory which offers trialists a consistent framework that can be used to describe, assess and enhance implementation potential. We encourage trialists to consider using it in their next trial.
The paper reports the results of nanotherapy of ovarian, breast, and pancreatic cancerous tumors by paclitaxel-loaded nanoemulsions that convert into microbubbles locally in tumor tissue under the action of tumor-directed therapeutic ultrasound. Tumor accumulation of nanoemulsions was confirmed by ultrasound imaging. Dramatic regression of ovarian, breast, and orthotopic pancreatic tumors was observed in tumor therapy through systemic injections of drug-loaded nanoemulsions combined with therapeutic ultrasound, signifying efficient ultrasound-triggered drug release from tumor-accumulated nanodroplets. The mechanism of drug release in the process of droplet-to-bubble conversion is discussed. No therapeutic effect from the nanodroplet/ultrasound combination was observed without the drug, indicating that therapeutic effect was caused by the ultrasound-enhanced chemotherapeutic action of the tumor-targeted drug, rather than the mechanical or thermal action of ultrasound itself. Tumor recurrence was observed after the completion of the first treatment round; a second treatment round with the same regimen proved less effective, suggesting that drug resistant cells were either developed or selected during the first treatment round.
nanoemulsions; microbubbles; ultrasound; chemotherapy; ovarian cancer; breast cancer; pancreatic cancer
There is worldwide interest in managing the global burden of long-term conditions. Current health policy places emphasis on self-management and supporting patient participation as ways of improving patient outcomes and reducing costs. However, achieving genuine participation is difficult. This paper describes the development of an intervention designed to promote participation in the consultation and facilitate self-management in long-term conditions. In line with current guidance on the development of complex interventions, our aim was to develop and refine the initial intervention using qualitative methods, prior to more formal evaluation.
We based the intervention on published evidence on effective ways of improving participation. The intervention was developed, piloted and evaluated using a range of qualitative methods. Firstly, focus groups with stakeholders (5 patients and 3 clinicians) were held to introduce the prototype and elucidate how it could be improved. Then individual 'think aloud' and qualitative interviews (n = 10) were used to explore how patients responded to and understood the form and provide further refinement.
The literature highlighted that effective methods of increasing participation include the use of patient reported outcome measures and values clarification exercises. The intervention (called PRISMS) integrated these processes, using a structured form which required patients to identify problems, rate their magnitude and identify their priority. PRISMS was well received by patients and professionals. In the individual qualitative interviews the main themes that emerged from the data related to (a) the content of the PRISMS (b) the process of completing PRISMS and how it could be operationalised in practice and (c) the outcomes of completing PRISMS for the patient. A number of different functions of PRISMS were identified by patients including its use as an aide-memoire, to provide a focus to consultations, to give permission to discuss certain issues, and to provide greater tailoring for the patient.
There was evidence that patients found the PRISMS form acceptable and potentially useful. The challenge encountered by patients in completing PRISMS may encourage exploration of these issues within the consultation, complementing the more 'task focussed' aspects of consultations resulting from introduction of clinical guidelines and financial incentives. Further research is required to provide a rigorous assessment of the ability of tools like PRISMS to achieve genuine change in the process and outcome of consultations.
Supporting patients' self care could have a major effect on the management of long‐term conditions, which has led to worldwide interest in effective self care interventions. In England, self care support is being developed through the “Expert Patients Programme”, which provides lay‐led generic courses to improve patients' self care skills. However, the clinical and cost effectiveness of such courses remains unclear.
Two‐arm pragmatic randomised controlled trial design with waiting list control in community settings in England. 629 patients with a wide range of self‐defined long‐term conditions were studied. The lay‐led self care support group involved 6‐weekly sessions to teach self care skills. Primary outcomes were self‐efficacy, reported energy and routine health services utilisation at 6 months. A cost‐effectiveness analysis was also conducted.
Patients receiving immediate course access reported considerably greater self‐efficacy and energy at 6‐month follow‐up, but reported no statistically significant reductions in routine health services utilisation over the same time period. The cost‐effectiveness analysis showed that patients receiving immediate course access reported considerably greater health related quality of life, and a small reduction in costs. If a quality adjusted life year was valued at £20 000 ($39 191; €30 282), there was a 70% probability that the intervention was cost effective.
Lay‐led self care support groups are effective in improving self‐efficacy and energy levels among patients with long‐term conditions, and are likely to be cost effective over 6 months at conventional values of a decision‐maker's willingness to pay. They may be a useful addition to current services in the management of long‐term conditions.
The WISE (Whole System Informing Self-management Engagement) approach encompasses creating, finding, and implementing appropriate self-care support for people with long-term conditions. A training package for primary care to introduce the approach was developed and underwent formative evaluation. This entailed exploring the acceptability of the WISE approach and its effectiveness in changing communication within consultations. The study aimed to refine the patient, practitioner, and patient level components of the WISE approach and translate the principles of WISE into an operational intervention deliverable through National Health Service training methods.
Normalisation Process Theory provided a framework for development of the intervention. Practices were recruited from an inner city Primary Care Trust in NW England. All practice staff were expected to attend two afternoon training sessions. The training sessions were observed by members of the training team. Post-training audio recordings of consultations from each general practitioner and nurse in the practices were transcribed and read to provide a narrative overview of the incorporation of WISE skills and tools into consultations. Face-to-face semi-structured interviews were conducted with staff post-training.
Two practices out of 14 deemed eligible agreed to take part. Each practice attended two sessions, although a third session on consultation skills training was needed for one practice. Fifty-four post-training consultations were recorded from 15 clinicians. Two members of staff were interviewed at each practice. Significant elements of the training form and methods of delivery fitted contemporary practice. There were logistical problems in getting a whole practice to attend both sessions, and administrative staff founds some sections irrelevant. Clinicians reported problems incorporating some of the tools developed for WISE, and this was confirmed in the overview of consultations, with limited overt use of WISE tools and missed opportunities to address patients' self-management needs.
The formative evaluation approach and attention to normalisation process theory allowed the training team to make adjustments to content and delivery and ensure appropriate staff attended each session. The content of the course was simplified and focussed more clearly on operationalising the WISE approach. The patient arm of the approach was strengthened by raising expectations of a change in approach to self-care support by their practice.
The paper describes droplet-to-bubble transition in block copolymer stabilized perfluoropentane nanoemulsions. Three physical factors that trigger droplet-to-bubble transition in liquid emulsions and gels were evaluated, namely heat, ultrasound, and injections through fine-gauge needles. Among those listed, ultrasound irradiation was found the most efficient factor. Possible mechanisms of bubble generation and growth discussed in the paper include liquid-to-gas transition inside the individual bubble; bubble coalescence; and diffusion of dissolved air and/or perfluoropentane from small bubbles into larger bubbles (i.e., Oswald ripening). The last two factors result in irreversibility of the droplet-to-bubble transition. In gel matrices, ultrasound-induced droplet-to-bubble transition was substantially inhibited but was catalyzed by large (hundred micron) pre-existing bubbles irradiated by low frequency (hundred kilohertz) ultrasound. The dependence of the droplet-to-bubble transition on initial bubble size is theoretically treated and the role of increase of surface area in promoting bubble coalescence is discussed. Therapeutic implications of observed effects are discussed.
Nanoemulsions; Microbubbles; Vaporization; Thermal effects; Acoustic droplet vaporization; Ultrasound imaging; Ultrasound therapy
A new class of multifunctional nanoparticles that combine properties of polymeric drug carriers, ultrasound imaging contrast agents, and enhancers of ultrasound-mediated drug delivery has been developed. At room temperature, the developed systems comprise perfluorocarbon nanodroplets stabilized by the walls made of biodegradable block copolymers. Upon heating to physiological temperatures, the nanodroplets convert into nano/microbubbles. The phase state of the systems and bubble size may be controlled by the copolymer/perfluorocarbon volume ratio. Upon intravenous injections, a long-lasting, strong and selective ultrasound contrast is observed in the tumor volume indicating nanobubble extravasation through the defective tumor microvasculature, suggesting their coalescence into larger, highly echogenic microbubbles in the tumor tissue. Under the action of tumor-directed ultrasound, microbubbles cavitate and collapse resulting in a release of the encapsulated drug and dramatically enhanced intracellular drug uptake by the tumor cells. This effect is tumor-selective; no accumulation of echogenic microbubbles is observed in other organs. Effective chemotherapy of the MDA MB231 breast cancer tumors has been achieved using this technique.
Nanobubbles; cavitation; collapse; coalescence; contrast-enhanced ultrasonography; targeted chemotherapy
In chronic disease management, patients are increasingly called upon to undertake a new role as lay tutors within self-management training programmes. The internet constitutes an increasingly significant healthcare setting and a key arena for self-management support and communication. This study evaluates how a new quasi-professional health workforce – volunteer tutors – engage, guide and attempt to manage people with long-term conditions in the ways of 'good' self-management within the context of an online self-management course.
A qualitative analysis of postings to the discussion centre of 11 online classes (purposively selected from 27) run as part of the Expert Patients Programme. Facilitators (term for tutors online) and participants posted questions, comments and solutions related to self-management of long-term conditions; these were subjected to a textual and discursive analysis to explore:
a) how facilitators, through the internet, engaged participants in issues related to self-management;
b) how participants responded to and interacted with facilitators.
Emergent themes included: techniques and mechanisms used to engage people with self-management; the process facilitators followed – 'sharing', 'modelling' and 'confirming'; and the emergence of a policing role regarding online disclosure. Whilst exchanging medical advice was discouraged, facilitators often professed to understand and give advice on psychological aspects of behaviour.
The study gave an insight into the roles tutors adopt – one being their ability to 'police' subjective management of long-term conditions and another being to attempt to enhance the psychological capabilities of participants.
In England, the Expert Patients Programme, a lay-led chronic disease self-management course, was developed to improve self-care support and skills. The course is designed for anyone with a self-defined long-term condition, and attracts a heterogeneous group of patients. A randomised controlled trial has demonstrated effectiveness in improving subjective health. However, it is not known whether particular patient characteristics predict the impact of the course.
To determine whether baseline characteristics predict clinical outcomes from attendance at a chronic disease self-management course; and to assess whether identification of such characteristics assists in targeting the course to individuals most likely to benefit.
Design of study
A post-hoc subgroup analysis of data from a randomised controlled trial to explore predictors of three trial outcomes: self-efficacy, energy, and health-related quality of life.
Participants with self-defined long-term conditions (n = 629) were recruited from community settings in all 28 strategic health authorities in England.
Multiple regression was used to examine interactions between baseline variables and trial outcomes.
The predictors demonstrating significant interactions were: age and general health, and baseline values for self-efficacy, energy levels, and health-related quality of life.
Participants with lower self-efficacy and health-related quality of life at baseline demonstrated more positive health outcomes. The Expert Patients Programme may have a protective effect on health-related quality of life for patients with poor health and low confidence. Younger people benefited substantially more than older people. Results suggest that positive outcomes associated with the course will be demonstrated with a wide variety of patients, although it may be worthwhile encouraging attendance of younger patients, those lacking confidence, and those coping poorly with their condition.
chronic disease; outcome studies; randomised controlled trial; self-care
Patient information has been viewed as a key component of self-management. However, little attention has been given to methods of dissemination or implementation of effective information strategies. Previous problems identified with the use and implementation of patient information point to the need to explore the way in which patients engage with and use information to support self-management for chronic conditions.
Four published qualitative studies from a programme of research about self-management were analysed as a group; these included studies of the management of inflammatory bowel disease (IBD); self-help in anxiety and depression (SHADE); menorrhagia, treatment, information, and preference (MENTIP) study; and self-help for irritable bowel syndrome (IBS). For the analysis, we used an adapted meta-ethnographic approach to the synthesis of qualitative data in order to develop an evidence base.
The ontological status and experience of the condition in everyday life was the most dominant theme to emerge from this synthesis. This, coupled with access to and experience of traditional health services responses, shaped the engagement with and use of information to support self-management. Five key elements were found which were likely to influence this: the perception and awareness of alternative self-management possibilities; the prior extent and nature of engagement with information; the extent of and ability to self-manage; opportunities for use of the information and the stage of the illness career; and congruence and synergy with the professional role.
People with chronic conditions need support from providers in both supply and engagement with information, in a way which gives legitimacy to the person's own self-management strategies and possible alternatives. Thus, a link could usefully be made between information offered, as well as patients' past experiences of self-management and engagement with services for their condition. The timeliness of the information should be considered, both in terms of the illness career and the type of condition (i.e., before depression gets too bad or time to reflect on existing knowledge about a condition and how it is to be managed) and in terms of the pre-existing relationship with services (i.e., options explored and tried).
More considered use of information (how it is provided, by whom, and at what point it should be introduced) is key to facilitating patients' engagement with and therefore use of information to support self-management.
Self-care interventions are promoted as effective strategies for improving the quality of life and health outcomes for individuals with long-term health conditions. Outcome measures used in evaluations using Randomised Controlled Trials (RCTs) are not designed to consider patients' prior management strategies and experience of illness. Yet the experience of illness literature suggests that adjusting to living with chronic illness, together with broader contextual influences, are likely to be relevant to understanding responses to self-management initiatives. Using group and individual interview data we attempt to illuminate the transposition of IBS from a condition unsatisfactorily managed by medicine to one successfully managed within the life worlds of individuals. If routine embedding of complex interventions depends on the accomplishment of integration and workability in patients' everyday lives then the design and evaluation of such interventions should view participation as part of a process of continuity as well as change. Responses to formal self-management can be extended beyond psychological and other quantitatively measured outcomes. A useful addendum to trial outcomes for self-management education is an understanding of change as being inextricably linked to people's previous attempts to, and experience of, managing long-term conditions. We suggest that the benefits of understanding the prior experience of managing illness and contact with health services include the acceptability and workability of complex interventions in patients' everyday lives.
A key element of the United Kingdom (UK) health policy reform in relation to chronic disease management is the introduction of a national programme seeking to promote self-care from within the National Health Service (NHS). The mainstay of the Expert Patients Programme (EPP) is a six-week training course that provides the opportunity for anyone with a long-term condition to develop new skills to manage their condition better on a day-to-day basis. The course forms part of the NHS self-care support programme, is administered by Primary Care Trusts (PCTs) and delivered by people who have personal experience of living with a long-term condition.
The NHS' official Expert Patients Programme website presently states that, "Pilot EPP courses began at 26 NHS PCT sites across England in May 2002, and by May 2004 approximately 300 PCTs had either actively implemented pilot courses or had committed to joining. The majority of PCTs are now coming to the end of the pilot phase, with many implementing plans to make EPP sustainable for the long-term." The NHS website heralds the pilot "a success."
A national, postal survey of PCT EPP Leads was undertaken in order to examine both the evolvement of EPP during its pilot stage and future plans for the programme. A questionnaire was sent out to the 299 PCTs known to have committed to the EPP pilot, and an excellent 100% response rate was obtained over a 3-month period (April-July 2005). One marker of success of the Expert Patients Programme implementation is the actual running of courses by the Primary Care Trusts. This paper explores the extent to which the implementation of the pilot can indeed be viewed as a "success," primarily in terms of the number of courses run, and considers the extent to which PCTs have carried out all that they were committed to do. Findings suggest that the more time an EPP Lead dedicates to the Programme, the more likely it is that EPP has run successfully in the past, and the more likely it is that it will continue to run successfully in the future. Other factors indicating future EPP success include collaborating across PCTs to share co-ordinators, tutors, and funding.