Description of the condition
The treatment and management of long-term health conditions (including those associated with physical, psychological, sensory, or cognitive problems) is the greatest challenge facing health systems around the world today (UN Secretary General 2011). Strategies used by health professionals to engage, support and empower people with long-term conditions have an important role in improving health outcomes (Wanless 2002; George Institute 2011). Patients who are better informed, more involved in decisions about their care and more 'activated' (i.e. recognise that they have an important role in self-managing their condition(s) and have the skills and confidence to do so) (Hibbard 2004) will experience improved health and better quality of life (Michie 2003; Schmittdiel 2008). Strengthening patients' autonomy and capacity to self-manage their health is pivotal to policymakers' attempts to control healthcare costs, particularly in times of economic recession. Some policymakers hope that this may also help to tackle unacceptable health inequalities between socioeconomic groups (Department of Health 2009).
The Chronic Care Model, which has been highly influential internationally, stresses the need to transform health care for people with long-term health conditions from a system that is largely reactive, responding mainly when a person is sick, to one that is much more proactive, focused on supporting patients' ability to self-manage their health (Wagner 1998; Epping-Jordan 2004; Nolte 2008). The model advocates an active role for patients, who are encouraged to become both more knowledgeable about factors affecting their condition(s) (including strategies for preventing exacerbations or ameliorating symptoms), and more actively involved in decisions about their care. The clinician's responsibility is to gauge the extent of the patient's knowledge, skills and confidence to self-manage his or her health, to strengthen this where necessary, and to ensure that relevant interventions and support services are available (Von Korff 1997; Department of Health 2011; Year of Care 2011). At the heart of the model is an informed, activated patient, supported by a well-prepared, proactive primary care team, working together to develop and implement a personalised care plan.
The rising prevalence of multi-morbidity makes the search for effective ways of developing personalised approaches even more important. Demographic change and longer life expectancy means that increasing numbers of people have more than one chronic condition, requiring specially tailored approaches to the management of complex combinations of conditions and treatment strategies (Barnett 2012). The specialty-led, single disease framework that characterises the organisation of most medical care is outdated. Ideally, care for people with multiple chronic conditions should be holistic: person-focused rather than disease-focused, and responsive to individuals' experiences of illness and treatment effects and their personal priorities (Mangin 2012).
In managing long-term health conditions, the aims are: to minimise the negative impacts and maximise the potential for improved functioning and well-being; to strengthen people's capabilities for self-managing their condition; to reduce health risks by improving health-related behaviours; and to minimise dependence on resource-intensive, costly health services. Personalised care planning is seen as a promising way to achieve these goals.
Description of the intervention
Personalised (or collaborative) care planning aims to ensure that patients' values and concerns shape the way chronic conditions are managed. Instead of focusing on a standard set of disease management processes determined by clinicians, this approach encourages patients to select treatment goals and to work with clinicians to determine their specific needs for treatment and support (Reuben 2012). The process involves a shift from reactive care (waiting for patients to consult with symptoms) to a proactive approach in which patients are invited to attend specially scheduled care planning consultations. For the purpose of this review, we define personalised care planning as: an anticipatory (forward-looking), negotiated discussion or series of discussions between a patient and a health professional (perhaps with other professional or family members present) to clarify goals, options and preferences and develop an agreed plan of action based on this mutual understanding.
In personalised care planning, patients and clinicians identify and discuss problems caused by or related to the patient’s condition(s), giving due consideration to both clinical tests and treatments and patients' accounts of the practical, social, and emotional effects of their condition(s) and treatment(s) on their daily lives. They then engage in a shared decision-making process involving goal setting and action planning, focused on determining priorities, agreeing realistic objectives, solving specific problems, and identifying relevant sources of support. In some cases a family member, carer/caregiver, or friend may also be included in the discussion. Management options and support needs under discussion might include any or all of the following:
clinical tests and treatments,
education or support,
strategies for modifying health-related behaviours, managing stress, or solving practical problems.
A collaborative process in which patient and clinician discuss treatment or management goals (goal setting- see B below) and agree a plan for tackling these (action planning - see C below) are the essential features, but the full process may involve any of the following steps (see Figure 1):
A. Preparation: The patient may be invited to a preliminary appointment to check their progress and undergo relevant clinical tests. Information (printed, electronic, written, or verbal) may be provided before or during the care planning appointment, to encourage the patient to reflect on his or her condition. This might include test results, and information about treatment options, or about health-related behaviours such as diet, exercise or smoking.
B. Goal setting: Aimed at agreeing treatment or management goals, the goal setting process involves eliciting and clarifying patients' understanding of their condition, their values, outcome preferences and priorities. Patients may be encouraged to talk about their experience of living with the condition, their beliefs and concerns, and their comprehension of, and reactions to the information provided.The discussion of what matters to them may cover treatment or management options, desired outcomes, lifestyle or behaviour changes, practical, social and emotional challenges, and problem solving strategies. In personalised care planning, patients have scope to influence the agenda for discussion, and the choice of goals and priorities is not restricted to a pre-specified list of professionally-determined options.
C. Action planning: A plan is jointly developed for working towards agreed goals. This may include identifying practical ways in which the patient can achieve their behavioural goals (for example, how and when to take more exercise), referring the patient to external sources of support, either within formal health services (for example, health coaching or rehabilitation services), or in the community (for example, exercise or cookery classes), or peer support. The plan may also include clinician-ordered tests or treatments, referral to other clinical specialists or professionals, educational materials or courses, access to aids or appliances, care assistance or domestic help.
D. Documenting: The agreed actions are usually documented in a specially designed record (printed, electronic, or written) for use by clinician(s) involved in the patient's care and/or for use by the patient as an aide-mémoire. These may be either a single shared record, or two separate records containing appropriate detail for clinician or patient.
E. Coordinating: The clinician ensures that all agreed tests, treatments, interventions, education or support packages agreed in the action plan are available to the patient and provided in a well-coordinated fashion. This may include input from multi-disciplinary team members, from hospital- or community-based specialists, from educationalists and other staff, or from community organisations or support groups.
F. Supporting: Patient and clinician agree a schedule for regular, systematic follow-up that may involve a number of contacts (face-to-face, telephone, or electronic) to provide appropriate support to help the patient solve problems and achieve his or her goals. This might take the form of health coaching, motivational support, problem solving, or simply checking and reinforcing progress in implementing the agreed plan.
G. Reviewing: A meeting (face-to-face or remote) during which patient and clinician jointly review progress and plan next steps.
How the intervention might work
Personalised care planning aims to ensure that patients receive appropriate support for self-managing their condition alongside any necessary clinical treatments from health professionals. The principles of self-management have been developed in a number of theoretical models, mostly from the fields of psychology and behavioural science. These focus on understanding the factors that shape behaviour and those that might help people make the necessary adaptations to improve their health and ability to cope with illness and disability. Of these, Bandura's Social Cognitive Theory (Bandura 1977), Prochaska and DiClemente's 'Stages of Change' trans-theoretical model (Prochaska 1992), and Leventhal's Self-Regulation Theory (Leventhal 1998) are most often referred to. Taken together, these point to the importance of a sense of control or empowerment that can give people the confidence and motivation to take on and persist with new and difficult tasks. Interventions focus on confidence-building and equipping patients with the knowledge and skills to set personal goals and develop effective problem-solving strategies.
A commitment by both clinician and patient to shared decision making is considered essential for personalised care planning. The process is unlikely to succeed if either party is reluctant to participate. In shared decision making, clinicians and patients work together to understand problems, preferred goals and outcomes, sharing information and identifying options with the aim of reaching mutual agreement on the best course of action for the individual patient (Charles 1999; Glasgow 2005; Elwyn 2012b; Entwistle 2012; Mulley 2012). This approach recognises explicitly that it is usually appropriate to enable patients to make decisions about their care, ensuring they are well-informed and well-supported in the process of deliberation and decision making. Shared decision making takes as its starting point the notion that two types of expertise should be involved in selecting treatment or management options. Clinicians' expertise is based primarily on knowledge of the diagnosis, likely prognosis, treatment and support options, and the range of possible outcomes based on research evidence and population data; while patients usually know more about the impact of the condition on their daily life, their personal attitude to risk, values and preferences, and the constraints they may face in implementing any recommended behaviour changes. Both types of knowledge are needed to manage illness successfully, so both parties should be prepared to share information and take decisions jointly.
This concept (shared decision making) has often been applied to ‘acute’ or ‘elective’ situations where there are choices between discrete interventions that are professionally controlled (for example, choice between a prescribed medicine or surgery, or choice about whether or not to have a ‘preference-sensitive’ screening test that only licensed professionals can administer), but it is also central to personalised care planning for chronic conditions when clinicians work with patients to determine goals and priorities (Bodenheimer 2003; Tsai 2005). Effective management of chronic conditions usually involves both tests and treatments prescribed by clinicians, and actions that patients must do for themselves, such as administering medication appropriately, or making lifestyle changes. In some cases, a patient may be better informed about their condition than the clinician, in which case the clinician should respect this expertise and take account of it in the planning process. Some patients may not need support for self-management or behaviour change, but, for those that do, collaboratively-set goals and self-selected behavioural targets are seen as more motivational than clinician-assigned goals (Michie 2003). The process involves both shared decisions about how best to manage the condition, and shared responsibilities for implementing mutually agreed actions.
Why it is important to do this review
Despite widespread support for the principle of personalised care planning, the nature and extent of evidence in support of this approach is unclear. A systematic review is needed to assess its likely effects. The model has been promoted by the World Health Organization (WHO) and encouraged in a number of countries including Australia, the UK and USA (Singh 2008), but international surveys show that many people with long-term conditions do not receive sufficient support from health professionals to enable them to plan their care and self-manage their condition(s) effectively (Schoen 2011). For example, it has been government policy in England since 2010 to ensure that all patients with long-term conditions are involved in a care planning process (Department of Health 2009). This commitment has recently been strengthened by inclusion of an explicit promise in the National Health Service Mandate that "everyone with long term conditions, including people with mental health problems, will be offered a personalised care plan that reflects their preferences and agreed decisions" ( Department of Health 2012). In certain cases people with complex conditions or combinations of conditions may be offered a personal health budget to cover the costs of needs identified during the care planning process (Forder 2012). However, a coordinated, personalised approach is not yet the norm in everyday practice. While most patients with long-term conditions in England report having some sort of care planning discussions with clinicians in primary care, only a small proportion experience proactive, systematic support along the lines described above (Burt 2012; Newbould 2012).
Implementing care planning in primary care involves significant organisational and cultural change (Year of Care 2011). Health professionals may be reluctant to embark on this if they do not believe it is warranted by the evidence (Blakeman 2006). They may also be unwilling to adopt this approach if they feel it will be too time-consuming for them or too burdensome for their patients (Coulter 2011). There is a need for more information about which components of care planning are necessary and which may not be, and which types of tools or interventions are helpful. For example, when is it important to complete the cycle of support and review, and when might it be sufficient to engage patients in goal setting and action planning only? Interventions specially designed for patients, clinicians or both may help to overcome barriers to implementation (see Types of interventions below).
People with multiple co-morbidities or cognitive impairments may find participation in care planning and self-management especially difficult (May 2009).There are also concerns that this approach could exacerbate health inequalities if people with low levels of health literacy or communication difficulties are less able to participate or lack the capacity to self-manage their health (Coulter 2011).
Several systematic reviews have pointed to the importance of a patient-centred, personalised approach to care management. Patient-oriented interventions to support self-management (for example information provision or educational programmes) have led to improvements in health outcomes for people with diabetes (Renders 2000; Deakin 2005), asthma (Powell 2002) and a number of other chronic conditions (Murray 2005; Foster 2007). Various strategies for increasing patients' motivation to adopt healthy behaviours (for example, motivational interviewing or use of written contracts) have helped to improved health outcomes for some patients (Rubak 2005; Bosch-Capblanch 2007; Lai 2010; Smedslund 2011). Interventions designed to improve communications and encourage greater patient involvement in decision making have been shown to improve patients' knowledge of screening or treatment options and outcomes, and in some cases have been shown to engender a more collaborative approach, but effects on health outcomes have been mixed (Kinnersley 2007; Wetzels 2007; Stacey 2011; Dwamena 2012; Edwards 2013). There is some overlap of focus between this latter group of reviews and the review we are proposing, in that they both cover strategies for engaging patients in decisions about their care, but none of these previous reviews has looked specifically at the effects of personalised care planning for patients with long-term conditions.