Introduction
Long-term conditions are important determinants of quality of life and health-care costs worldwide.18 Increasing focus has been placed on self-management, defined as:
The care taken by individuals towards their own health and well-being: it comprises the actions they take to lead a healthy lifestyle; to meet their social, emotional and psychological needs; to care for their long-term condition; and to prevent further illness or accidents.
Clark
et al.19 Copyright © 1991, © SAGE Publications.
SAGE Publications
The Wanless report, Securing our Future Health: Taking a Long-term View, suggested that the future costs of health care were very much dependent on:
How well people become fully engaged with their own health.20
Wanless
20 Contains public sector information licensed under the Open Government License v3.0.
The Crown
However, realising the potential of self-management requires effective ways of encouraging appropriate behaviour change in patients and professionals. There are a number of factors influencing self-management, including patient factors (e.g. lay epidemiology and health beliefs, self-efficacy, emotional responses to long-term conditions, identity and pre-existing adaptations), and wider influences (such as the organisation of the health-care system and access to material and community resources).21 A number of models of self-management have been proposed in the literature, including increasing access to health information5 and deployment of assistive technologies.22 Patient skills training (through the Chronic Disease Self-Management Program and its derivatives) can be used to encourage patients to enhance their individual self-management skills.23,24 There is evidence for the effectiveness of the programme on some outcomes,25 but there are significant limitations. Intervention ‘reach’ is defined as the:
. . . percentage and risk characteristics of persons who receive or are affected by a policy or program.
Glasgow
et al.26 © 1999 American Public Health Association.
American Public Health Association
Interventions with limited ‘reach’ are unable to translate the effectiveness of an intervention at the individual level to that of the wider population. In the case of the Chronic Disease Self-Management Program, requirements for self-referral or referral from health-care professionals means that levels of uptake can be low, and biased towards certain patient groups, threatening reach and equity.
Models of self-management support
Health policy in the UK has worked with a model that organises care for long-term conditions around three tiers: (1) self-management support for low-risk patients, (2) disease management for patients at some risk and (3) case management for patients with multiple, complex conditions.27 In the UK, the bulk of disease management is already delivered through primary care. Primary care is generally defined in terms of attributes such as a gatekeeping function and first contact care,28–30 but other attributes also make it an excellent platform for self-management support. Primary care offers open access between the health service and the population, can deliver continuity of care through an extended personal relationship or through informational continuity,28–30 and has a role in helping patients achieve care that balances compliance with clinical guidelines and consistency with patient needs and preferences. Delivering self-management support through primary care also maximises reach.
However, there are major barriers to achieving effective self-management support in primary care. Self-management is only one priority among many facing primary care professionals31 and there is evidence that many primary care professionals do not see self-management as a core part of their remit.32,33 This is especially true when incentives (financial and otherwise) are focused on specific clinical tasks and biomedical parameters.34
Achieving the potential of primary care in delivering self-management support
Our research team has engaged in a programme of research over a number of years that has explored the barriers to, and facilitators of, effective self-management support. On the basis of this work, we argue that self-management support requires the following.
A whole-systems perspective that involves interventions at the patient, practitioner and service organisation levels in the delivery of self-management support. Many self-management interventions have focused on patient behaviour change or professional training only, but we argue that each level has a different function in encouraging and supporting self-management behaviour, and that effects are maximised when interventions occur at all levels and include attention to patient actions outside the context of contacts with the health service.
13,14,35Widening the evidence base to acknowledge a range of disciplinary perspectives on the way in which patients and professionals respond to, and manage, their long-term conditions. Although psychology has dominated the design of many interventions for self-management support through models such as self-efficacy theory, there are a wide range of applied social science theories that can inform an understanding of the way that patients and professionals understand, respond to and manage long-term conditions.
36–38
The model has been designed to reflect these findings and provide a feasible and effective model of self-management support. The model () aims to support patients to receive guidance from trained practitioners working within a health-care system geared up to be responsive to patient need.
The WISE model. PRISMS, Patient Report Informing Self-Management Support.
Our approach broadly follows the phased development and evaluation framework outlined for complex interventions by the Medical Research Council (MRC).39,40 We have developed an evidence base for the elements of the WISE approach using mixed methodology: a combination of RCTs, nested qualitative studies and economic evaluation. In summary, the evidence shows that:
information can be effectively improved to incorporate patient experience and expertise alongside medical information about management and treatment
5,7,41clinician training in patient-centred consultation skills and shared decision-making with patients to guide and support self-management is acceptable and appropriate, and leads to positive outcomes
5health systems that are better aligned to patient practices of self-management are generally well received.
14,35,42
The WISE model as a complex intervention
Complex interventions are defined as those that:
. . . comprise a number of separate elements which seem essential to the proper functioning of the intervention although the ‘active ingredient’ of the intervention that is effective is difficult to specify.
Craig
et al.39 Copyright © 2008, British Medical Journal Publishing Group.
British Medical Journal Publishing Group
The WISE model, as applied to primary care, met this definition. The intervention was designed to impact on the patient, professional and system levels (see ). The primary target of the intervention was the practice. The overall aim of the intervention was to encourage practices to adopt a structured and patient-centred approach to the routine management of long-term conditions through providing skills, resources and motivation to make changes to service delivery in line with the principles of the WISE model ().
Process of care in the WISE model. PRISMS, Patient Report Informing Self-Management Support. EPP, Expert Patients Programme.
The development, and evaluation, of the training intervention took place prior to this trial, and details have been published elsewhere.43 The planned approach to training combines evidence-based approaches to changing professional behaviour with approaches to ‘normalise’ those behaviours in current practice. The intervention involved the whole practice and there were also ‘system’ links to the local health organisation, which provided access to additional resources (including a dedicated website of local groups and organisations providing self-management support).
The components of the WISE training intervention include the following:
Priority and agenda setting: an intervention, aimed to promote active patient participation in sharing their priorities and management preferences, was developed from the existing published literature and refined in a ‘think aloud’ and qualitative interview study.
44 The Patient Report Informing Self-Management Support (PRISMS) tool was based on a combination of patient-reported outcome measures and a values clarification exercise, intended to encourage patients to clarify and share values and priorities of personal importance.
45,46 The PRISMS tool is intended as a starting point for discussion of patient priorities.
Patient-centred information: information can be effective when it incorporates patient experience and expertise alongside medical information about management and treatment, and when it is given in a supportive and timely manner.
10Shared decision-making: shared decision-making about the appropriate type of self-management support, supported by PRISMS and by the use of appropriate ‘explanatory models’. Patients’ explanations and understanding of a condition often differ from the medical model. Explanatory models are ways to make sense of problems and encourage discussion about the causes and consequences of their condition.
Referral to community groups: to promote a whole-system approach to self-management, it is essential to engage with relevant community resources. Referral to third-sector providers (i.e. voluntary and community organisations) from primary care has clinically relevant benefits.
47 These groups provide services that are embedded within local community settings to help normalise health-related activities into everyday life. Despite the potential benefits of referral to third-sector providers, there remains an underutilisation of these services by primary care as practitioners report lack of knowledge of the services available. To promote the system change necessary between primary care and relevant third-sector providers, an online database of local self-management support options was developed.
Practice-based training sought to teach the following core skills to primary care staff:
Assessment of the individual patient’s self-management support needs, in terms of their current capabilities and current illness trajectory.
Shared decision-making about the appropriate type of self-management support based on that assessment (e.g. support from primary care, written information sources, long-term condition support groups or condition-specific education), facilitated by the PRISMS tool and the use of explanatory models.
Facilitating patient access to support. This may involve signposting patients to various resources depending on the outcomes of the assessment and shared decision-making processes. These may include access to the Expert Patients Programme, disease-specific courses (such as pulmonary rehabilitation) or generic support (such as befriending). The training encompasses ways that health professionals can negotiate with patients about the more appropriate use of health care.
In the case of IBS, this may also involve referral to psychological treatment services (CBT and hypnotherapy) for eligible patients (so-called ‘stepped-up care’). Patients with IBS were informed of the possibility of referral to such services through information leaflets.
As part of the training, primary care professionals received specific assistance in development of the core WISE skills, followed by integration of techniques through role play (with individualised performance feedback based on that role play).48 The intervention was delivered over two sessions. All relevant staff within the practice were invited to the first session, including general practitioners (GPs), nurses, practice managers and reception staff. Clinical staff were invited to the second session (Box 1). A short intermediate meeting was held between the two main sessions to review progress, and involved the nominated practice lead only.
A training manual was given to all of those who participated in the training for use within the training session and to support practice (see Appendix 1). The training was piloted and modified on the basis of the pilot. The intervention was conducted by trained facilitators working alongside the research team, rather than the research team itself, to test a model of delivery that would be feasible in routine practice and wider implementation.
Enhancement of the WISE model with psychological therapies
Our previous studies had identified a residual group (up to 20%) who fail to benefit and who show high levels of psychological ill-health despite the use of the WISE model.
Evidence demonstrates that physical and psychological factors have an impact on symptom chronicity in patients with chronic gastrointestinal disorders, not only in patients with FGID49 but also in patients with IBD.50 Such psychological components, particularly anxiety and depression, are important determinants of clinical outcome and health resource use. Although there are limited studies investigating effectiveness of psychological interventions for all FGID, the most common of these disorders (IBS) has been subject to a number of trials. In a systematic review and meta-analysis of the efficacy of psychological treatment for IBS, there was a 50% reduction in symptoms.51 Our own studies have shown that psychological treatments are of value in chronic gastrointestinal problems.52 Given the clear evidence of the clinical efficacy of CBT in common mental health problems,53 current best evidence would suggest that either CBT or hypnotherapy would be of utility. We therefore offered both in addition to treatment by the GP.
Cognitive–behavioural therapy
We developed a 12-week CBT intervention comprising an initial assessment of between 60 and 90 minutes, followed by up to 11 weekly, individual, face-to-face sessions of between 45 and 60 minutes. Session 1 consisted of a patient-centred assessment for problem identification, risk assessment and development of a shared problem formulation. The following sessions involved education about the condition and specific CBT techniques (pacing, behavioural activation, diary keeping, identifying and challenging negative and unhelpful thinking patterns, and the development of a longer-term management plan). Participants received a self-management manual with information about IBS, CBT and ‘patient stories’ typical of people’s experience of IBS and how to manage their symptoms.
Hypnotherapy
Gut-focused hypnotherapy consists of giving patients ideas about how the gastrointestinal system works and then using hypnosis to try and control abnormalities of gut function as well as dealing with any other factors that might exacerbate their condition. All sessions last 45–60 minutes on a weekly basis for up to 12 weeks, with the first consisting of an assessment of the patient and their symptom profile, followed by an ‘educational’ tutorial on simple gut physiology and how it might be controlled. Subsequent sessions involve the introduction of relaxation and hypnosis in general, followed by progressively more emphasis being placed on control of gut symptoms by the use of imagery or tactile techniques. All patients are given a compact disc to practise on a regular, preferably daily, basis.
The CBT therapist was an experienced and accredited therapist with the British Association for Behavioural & Cognitive Psychotherapies. A 2-day training workshop, provided by the trial team, consisted of a range of presentations about IBS and applying CBT interventions for people with IBS, with a focus on skills practice. The training was accompanied by a training handbook. The hypnotherapist had been previously fully trained and had been working for 2 years in the local hypnotherapy unit. CBT supervision was provided to the therapist on a fortnightly basis by applicant Karina Lovell (an experienced and accredited CBT therapist). Supervision for the hypnotherapist was provided on a regular basis by applicant Peter Whorwell (an experienced hypnotherapist).
Procedure
Initial and follow-up sessions
Following GP referral, the therapist contacted the participant to arrange the initial session at a convenient time. Each potential patient was given an information sheet prior to the first meeting, and those who agreed to take part signed a consent form to allow access to the self-reported measures (Patient Health Questionnaire-9 and Generalised Anxiety Disorder-7). Treatment sessions were delivered in a range of primary care settings, including practices.
The low-intensity aspects of WISE were rolled out from April 2009 and patients with a history of IBS who did not benefit from the WISE low-intensity intervention after 3 months were then given information about different step-up options by their GP or practice nurse. Following discussion with their GP, patients were directly referred to a therapy.
Recruitment
At the start of the project, both therapists identified the need to introduce themselves to the practices that could potentially refer to step-up, and, when possible, this took place. The aim of these meetings was to educate the practice team about the CBT and hypnotherapy treatments and to reiterate the referral protocol.
However, as a result of the low uptake of step-up via this route, alternative recruitment strategies were developed. This included building a relationship with the local primary care mental health teams in Salford that sought to promote the step-up with the relevant GP practices and facilitated a number of referrals. In addition, an individual letter to every GP in a WISE-trained practice was sent in March 2010, advising GPs about the availability of step-up for their IBS patients. In May 2010, in recognition that the referral rate to step-up remained very low, a leaflet describing the CBT/hypnotherapy options was produced in conjunction with NHS Salford Primary Care Trust (PCT); > 200 leaflets were then directly mailed to patients known to the trial. The step-up treatments were regularly advertised in WISE communications (e-mails and newsletters), and a poster advertising the availability of CBT or hypnotherapy for IBS sufferers was also displayed in patient waiting areas in WISE-trained surgeries.
