E-16 patient self-management
Anyone with a long-term condition gains experience with the condition and its management and will acquire and be given information from many sources. Much of the information may be inaccurate or biased, and much of the experience may mislead the patient. Education and training of the patient and family reduce the risk of developing incorrect and possibly harmful beliefs and habits. It increases the probability that the patients will manage better and need less professional input. The rehabilitation team are well-placed to take on education and teach the person how to manage their problems because of their long-term relationships and the scope of expertise available in the team. Being competent at teaching patients, family members, and other carers about the condition and how to respond to common new problems is essential for all team members. Equally important, team members must know the limits of their knowledge and not provide incorrect information. As always, they must act within their limits of knowledge and skill.
Table of Contents
The Competency.
The competency is that the rehabilitation professional shall be “Able to educate patients and families about all aspects of their illness (not just disease), and able to teach self-management skills.” Although only a doctor will know and should teach about the details of the disease, everyone should know enough to answer very straightforward questions. Conversely, a doctor should answer simple questions about speech and language therapy but will refer more complex questions to the appropriate team member. A document summarising the indicative behaviours, knowledge, and skills with some references can be downloaded here.
Introduction
When you take on a new role, you learn, “What do I do if …?”. This is true when starting a new job, joining a new chess club, moving to a new town or village, etc. It is also true when you become ill, the new role being ‘someone with ….’. Some responses are similar across all illnesses and will already be known; others will have been seen in ill family or friends, but the details of how to respond to happenings with a specific disease are not necessarily obvious.
People learn from experience, trial and error, and by seeking information. These methods work well, but sometimes, the errors can be associated with irreversible harm, chance variation may link an action with the wrong outcome, learning is incorrect, or information found is wrong. People are not taught about health, know little, and do not have good health literacy.
Health literacy has been recognised as necessary for public health, and one practical definition is ‘the capacity someone has to acquire sufficient knowledge and skills to confidently participate in their own health’. The importance of health literacy has been recognised by the NHS, which has produced a toolkit to improve it. The National Institute of Health and Care Research has a website on researching getting a health message across; Public Health England advises Local Authorities and Health Education England, who hope to improve health literacy.
Healthcare professionals can be effective teachers because they will have a good relationship with the patient, know how best to communicate and tailor the messages to the patient’s situation so that patient self-management is good. This competency ensures a better outcome from the effort.
Self-management and education.
Education is needed to become involved in self-management, but education can have a broader remit. For example, one may teach family members and carers about the disease and their role in managing problems, techniques involved in care, or the disease to increase understanding. The patient may also be educated about the underlying condition to increase their understanding and reduce fear of the unknown without impacting patient self-management.
Therefore, one should consider education much broader than teaching the patient how to manage their condition.
The meaning and nature of self-management are ambiguous, as Simon Fletcher and colleagues discussed in a paper, “The problem with self-management: Problematising self-management and power using a Foucauldian lens in the context of stroke care and rehabilitation.”. In a qualitative study on people who had had a stroke and their physiotherapists, Euan Sadler and colleagues found that patients generally thought self-management was “ Doing things for yourself and looking after yourself”.” In contrast, therapists considered it was “taking an active role in rehabilitation and managing one’s recovery and health.”
In another study on people after spinal cord injury, Sarah Munce and colleagues found that rehabilitation service managers had views quite different from those of patients and their family members, with a limited area of overlap (see Venn diagram figure 1 in the paper). Managers had a narrow and more directive vision.
Nini Jonkman and colleagues systematically reviewed the definitions of patient self-management used in reported studies. They developed four definitions of different types reported:
- Multiple components
- Education plus
- Single component
- Social cognitive behavioural
They suggested that the multiple-components model should be considered the primary type.
Unsurprisingly, service commissioners and providers are interested in promoting patient self-management because it seems person-centred, more effective, and less expensive. The Health Foundation has published A practical guide to self-management support, which advises how to do it.
Patient self-management evidence
Most trials investigating self-management concern medical management, especially diabetes. For example, Sarah Dineed-Griffin and colleagues identified 58 trials in a systematic review of self-management support strategies in primary healthcare practice. Twenty-two concerned diabetes, 12 chronic obstructive pulmonary disease, and eight depression, with all other conditions having five or fewer studies. They also reported the variety of components of the training.
J Franek from Health Quality Ontario reviewed ten trials investigating the Stanford Chronic Disease Self Management Programme in various conditions. The data suggested minor short-term improvements in outcomes. Sheila Lennon and colleagues reviewed self-management programmes for people after stroke and found 15 studies which provided some support but that further trials were needed. Margaret Heslin and colleagues reviewed interventions aimed at family carers of people who had had a stroke, and the data from ten studies gave limited evidence of both effectiveness and cost-effectiveness. A systematic review of self-management for people with low back pain suggested small benefits, not enough to justify inclusion in guidelines.
A large trial involving 418 people with knee pain investigated the ESCAPE-knee pain programme, which included self-management and found it improved outcomes. Another trial of the EXTRA programme, which included self-management, showed benefits for people with rheumatoid arthritis affecting arm function.
There are many other trials in different conditions. Overall some show small or short-term benefits, but others do not, and the interpretation is complicated by uncertainty about the content and the extent of rehabilitation self-management included.
Last, a systematic review of interventions to reduce hospital readmission after discharge found benefits and that “… more effective interventions are complex and support patient capacity for self-care.” The authors developed a Cumulative Complexity Model (figure one in the paper) used to understand the challenges faced by patients involved in self-management.
This was built on in an observational study by Isaac Barker and colleagues involving 9348 patients. They found that self-management capability, measured using the Patient Activation Measure, was associated with lower healthcare costs and less “… wasteful use across primary and secondary care.”
Conclusion
Although the evidence is not very strong, and there is limited evidence on the best ways to undertake education and foster effective self-management, it seems worthwhile to educate patients about their condition and to teach and support self-management skills to patients and their family carers. The process may also reveal significant patient beliefs or expectations that need correcting. Educating and teaching self-management also support person-centred care and shared decision-making because both depend on the person being as knowledgeable as possible.
