Wollin J, Fulcher G, McDonald E, Spencer N, Mortlock M, Bourne M, Simmons R. (2010) Psychosocial Factors That Influence Quality of Life and Potential for Self-Management in Multiple Sclerosis. International Journal of MS Care, 12, 133-141.
Interviewer: Michael Bouwman (MB)
Interviewee: Judy Wollin (JW)
MB: Introducing Professor Judy Wollin, School of Research and Midwifery, Griffith University, Australia. I’m speaking with Judy about her article co-authored with others listed on our website entitled, ‘Psycho-social Factors that Influence Quality of Life and Potential for Self-Management in Multiple Sclerosis’ and published in ‘International Journal of MS Care’. Welcome.
JW: Thank you.
MB: Your study explores quality of life and self-management issues in relation to Multiple Sclerosis. Could you talk about the impact of MS on the individual and the importance of self-management for those diagnosed with this condition?
JW: I’m happy to, Multiple Sclerosis is usually a degenerative disorder that people are commonly diagnosed around age 30, 35 so they’re young adults and even though there’s been some drugs that can slow the process it’s still a disease where the future is uncertain and some people have a mild variety, some moderate level of disability and a small number of people are severely disabled. Mostly it’s around walking, energy levels and general ability to maintain an independent lifestyle. So you can imagine people with mild Multiple Sclerosis, as long as they incorporate changes around managing fatigue usually can continue in the workplace and don’t need things like wheelchairs.
JW: So things like self-management rather than asking them to do the impossible, we’re asking people with MS to take charge of their health initiatives so that their relationship with health professionals is collaborative rather than dependent on what the health professional thinks is a good idea. That is the sort of self-management we’re talking about where we’re looking to see what factors influence someone’s ability to take charge of the health services that would most benefit them.
MB: And you did a survey of a large national sample of people with MS.
MB: Could you provide a brief summary of the aims and methodology used for that study?
JW: The study was collaborative project using the Australian Multiple Sclerosis longitudinal study database which is held at Canberra Hospital and Griffith University and also MS Australia, both Victoria and NSW. The aim of the project was to establish over a long period of time people with Multiple Sclerosis quality of life, the amount of support they had from family and friends, their level of taking charge of their disease and their mood of whether they’re depressed or not and their level of self-advocacy; what’s their belief in their ability to take charge of their day to day life and the idea was we would do multiple data collections with the same people. So we’ve now had just over a thousand people complete 3 rounds of surveys so that we can track their wellbeing and track how much support they need from family and friends so that it’s a first time a longitudinal study has been done looking at what’s important around quality of life.
MB: Okay and Judy can you tell us a little bit about your findings, especially in relation to quality of life over the trajectory of the illness?
JW: There’s 2 things I’d like that draw people’s attention to, one is that what we noticed was people’s psycho-social; that is things around psychological wellbeing, level of dependence and their social relationships along with overall quality of life, deteriorated most markedly when they changed from mild to moderate and that people with MS the change between moderate and severe they were much more stable. That is seems to be the big shock is when people move from having very few symptoms through to having symptoms that are starting to impact day to day, making work difficult, making usual responsibilities difficult, you know work around the home and caring for children and the usual activities that you would expect from a 30 to 40 year old and that’s when they need support. We can’t wait until people fall in a heap when they’ve perhaps got increasing disability, we have to step in early to help build resilience and help build capacity to deal with this disorder.
MB: Right, and the findings from your study confirm previous findings of statistically significant correlations between psycho-social factors and quality of life. Could you elaborate on those findings?
JW: Yes, we were very interested to find that the small amount of research that’s been done has found psychological quality of life; that is the level of mood, whether somebody’s depressed or not and their self-efficacy, their belief in their ability to manage are very strongly linked to their overall quality of life and that disease duration and disease severity are not nearly so important and this is really important information for health service providers and health policy makers so that people with Multiple Sclerosis can look to get services that are most helpful and they’re around managing depression, optimising recovery from depression, optimising treatment of depression so that then their self-esteem improves and their ability to take an active role in their disease improves. So it’s all around building somebody’s capacity to take an active role in their disease management and an active role in their life.
MB: Yes, what are the practical implications of your study and how are the findings being translated into health policy and service delivery?
JW: The most important implication for practice is that when the health professional meets a person with MS it pays to do a well-rounded, a complete health assessment, not just looking at the physical – looking at their psychological wellbeing and their social wellbeing. And so that’s quite a change for you know a nurse perhaps in a neurological ward or a neurologist and so that was important, it indicates where health professionals might need to upskill and also where they might need to learn to collaborate much more with colleagues who specialise in those areas. And around health policy it’s suggesting to policy makers that they need to look at ongoing ways of providing this kind of support, that if you really want to encourage people to take an active role in their disease management and their day to day life, you have to look after the whole person, not just the physical components. I think that what’s important about this research is that it really illustrates to health professionals that we need to take a broad view when we’re looking at both health needs and quality of life and I think that it’s important that health professionals don’t decide for other people what is good quality and what’s not, that we actually ask the people with these ongoing health conditions and disabilities what is it that they value and what is it that they want and this just provides evidence that if you engage with the people about what they want, they’ll tell you.
MB: Well thank you Judy for talking with us for Griffith University’s research week on this important topic.
JW: It’s a pleasure.
This podcast was produced by the International Program of Psycho-Social Health Research (IPP-SHR), Griffith University for the Logan Research Showcase held on 6 September 2011. For further information contact Dr Pam McGrath at [email protected]