Professor Stanley Cohan, Providence Multiple Sclerosis Center, USA and Professor Gavin Giovannoni, Barts and The London school of Medicine, UK, discuss the hidden symptoms of MS that impact patients’ everyday lives and consider how these could be better addressed by healthcare professionals and society as a whole to continue to improve patients’ overall quality of life.
Stanley Cohan: Quality of life is one of the paramount issues for patients with multiple sclerosis. Obviously for people who are severely disabled physically, having facilities, having access, is a critically important issue. But the majority of patients with multiple sclerosis fortunately don’t have that level of physical disability. And what happens is their problems are discounted by the general public, by employers, by educators and by governments because they don’t look sick. If these are people struggling with memory, struggling with overwhelming fatigue, frequently struggling with depression, yet they look just fine, and the failure to create accommodation, which has gigantic economic and social impact on quality of life, is not being properly addressed. And I think the need to educate the public, to educate municipalities, to educate government, to educate our society in general, that this is a disease that affects people in many ways and some of the most devastating effects are those that are not recognisable to the person who doesn’t have it.
Gavin Giovannoni: Quality of life from a patient’s perspective is how they are functioning in society. So, quality of life is keeping people interactive socially, occupationally, keeping them physically active, participating in society, that’s quality of life, you know. And to do that you’ve got to stop MS disease activity, prevent them from acquiring end organ damage and suppress all the inflammation so they’re not fatigued and have depression and anxiety, so it’s, you know, keeping them well. That’s what quality of life is. So, the care team to improve quality of life, they can approach MS holistically, not just focus on the overt manifestations of the disease, we need to look at hidden problems. So, this is depression, anxiety, cognitive problems, fatigue, bladder and bowel dysfunction, sexual dysfunction – things that patients often don’t come and volunteer to us. Another issue is social isolation and a lot of people with multiple sclerosis become socially isolated and we know that reduced social capital, in other words reduced networks, so these are your friendships and relationships, have an impact. So, people with reduced social capital do a lot worse. And we now have opportunities to expand social capital using social prescribing.
Social prescribing is things that GPs prescribe that are not medications, so these will be like exercise, or group therapy, or art therapy, or music therapy; there’s even one called laughter therapy. Sometimes it’s just activities, honestly the activities are irrelevant, what’s important is the social activity that goes around with it. So, these people are getting out of their homes, they’re meeting other people, forming relationships, and those relationships is what improves their social capital.
So, unless we ask the questions and identify these patients, we’re not going to be able to offer them the necessary treatments to try and counteract these things that are associated with poor quality of life.