So much around brain health encompasses self-management, there is now more technology available encouraging people with MS to 'lean in' to be supported, but it doesn't always feel comfortable and can be lonely. Self-management is about the actual behaviours and actions while self-efficacy is about the confidence and belief in one's ability to perform those actions. How can clinicians better support a person with MS to self-manage their own care to maintain or improve quality of life.

Objectives:

• The terms self-management and self-efficacy are related but refer to different concepts, why are both crucial to supporting people with MS believe in their ability to control their behaviour, motivation and social environment, organise themselves and think ahead.

• Understanding of the importance of psychological well-being, resilience, hope and good mental health and how self-efficacy is directly related to these health behaviours

• Overview of key aspects, barriers and benefits of self-management in MS

• When and how should brain health be discussed in the clinic?

Summary

Are clinicians equipped to promote brain health and empower self-management and self-efficacy in people with multiple sclerosis?

Holistic MS management involves a focus on condition-specific targets such as neuroprotection and remyelination, as well as non-disease targets, including brain, metabolic,and social health.

“Many of these non-MS targets have to be dealt with in general practice and other specialist teams, and the person with the disease will often be the driver,” explained Gavin Giovannoni,Professor of neurology at Barts and The London School of Medicine and Dentistry. “We need to think about how we get people with MS to engage in optimising their brain, metabolic, and social health.”

The key here is enabling self-management by supporting behaviour change, he went on.“Behavioural change is required to shift people from being passive recipients of healthcare to being active participants in their own healthcare.”

Supporting behaviour change

Behavioural science is about choice making. “It's about trying to understand why people make the decisions they do, how they make those decisions, and how they receive and actupon the information we give them, said Professor Matthew Cripps, director of behaviour change at NHS England and NHS Improvement. This enables the design and development of aids and services that help people to make healthier decisions, he explained.

There are a number of behavioural science models, with COM-B (capability, opportunity, motivation, behaviour) being among the most commonly used. “It helps you understand what needs to be in place for a behaviour to occur, as well as what might be acting as a barrier,” said Matthew, adding that people needed the capability, opportunity, and motivation to make a change. Using COM-B can reveal the person’s barriers to and drivers of change, enablinghealthcare professionals to personalise their solutions advice to the person in front of them, Matthew explained.

Another model, MINDSPACE, he went on, can help teams to frame and deliver that advice. It lists the nine ways in which the human mind receives messages and chooses what to do with them, namely messenger, incentives, norms, defaults, salience, priming, affect, commitments, and ego.

All of these feed into shared-decision making, which Matthew said was one of the best ways to encourage people to choose to self-manage their health. “You can use the MINDSPACE concepts to create a pathway that makes a real difference,” he said. (INSERT SLIDE 15)

Psychological well-being in self-efficacy

Well-being, or how people feel and function on a personal and social level and how they evaluate their lives, is influenced by self-efficacy, defined as a person’s perception of their ability to plan and execute the tasks necessary to attain their goals, and their coping strategies.

“When people feel they have greater self-efficacy, their well-being is higher. It promotes more positive relationships, greater autonomy, and higher optimism,” said Dr Christine Longinotti, clinical psychologist with the Central London Community Healthcare NHS Trust, adding that self-efficacy had also been linked to higher treatment adherence, as well as better disease management, adjustment, and cognition.

She added that utilising problem-based coping strategies, in which people attempt to address the issue rather than avoid it or seek to reduce the associated emotional distress, also improved self-efficacy

HCPs can promote self-efficacy by supporting people to perform particular taskssuccessfully. “Using mental imagery to imagine success, preparing for setbacks, and monitoring performance can be helpful,” said Christine, adding that clinicians could also help reduce negative feelings by encouraging the development of coping and problem-solving skills.

Cognitive behavioural therapy (CBT), which helps people identify unhelpful thoughts and behaviours that may impact on how they are feeling, can also sometimes be useful. Common CBT techniques include setting SMART (specific, measurable, achievable, relevant, and time-bound) goals and cognitive restructuring, which aims to reframe unhelpful thoughts in a more helpful way, said Christine.

Self-efficacy and self-management: A personal story

Self-efficacy is a worthwhile goal, but it’s important to remember that some people may need more help achieving it than others.

When Rachel Horne, journalist and honorary research fellow at Queen Mary University of London, was diagnosed with MS 15 years ago, her neurologist told her to “go off and enjoy” her life.

“He might have thought this was encouraging, but for me, it was the opposite thing to what I needed to hear,” she said. “I had just been diagnosed with this terribly unpredictable, chronic, and potentially disabling disease. I wanted to know not just how to cope with my MS, but if there was anything I could do to help myself.”

Over the next few years, Rachel relied upon her self-efficacy to manage her relapses and symptoms, whether that was arranging for orthotics and a brace, maintaining her mobilitythrough exercise, or acquiring prism glasses, for example. She was also faced with mental health challenges. “I was coming to terms with the disease, which just looked like a series of losses,” she said, adding that every time she thought she had dealt with a problem, her condition would “shift and evolve”. “For several years I saw a therapist who helped me come to terms with the diagnosis. There was a realisation that there were some things I could no longer do, and I would need to adapt.”

She acknowledged that her “privileged position” as a white, middle class woman with a journalism background enabled her to research and access the support she needed. Not everyone has the same self-management opportunities, however. “We have to recognise that while we are treating MS, we're also treating a person,” she said, emphasising that people from different backgrounds or with different cultural approaches to illness might need additional self-management and self-efficacy support.