Quality of Life And Living With Multiple Sclerosis

What quality of life means for me.

I’m starting a blog! Or, at least, I will be blogging occasionally. Below you can find my first blog post, but let me first tell you a little bit about myself. I’m Heidi, I’m an expat from Austria living in the US. In my professional life, I am a psychologist and researcher, currently doing a PostDoc. I’m also a clinical mental health (CMHC) counselor, though I’m still in the process of getting a license in the US. And I have multiple sclerosis (MS).

My research is about quality of life (QOL) in general, but I’ve also looked at QOL in the MS community. In this blog, I’ll try to communicate my research, but also talk about what it’s like to live with MS. The ultimate goal of this blog is to offer strategies to improve the quality of life of people who have a serious chronic disease, such as MS. I see myself as a mediator between two worlds — using research results for supporting people to improve qol. As I am a counselor my goal is to offer strategies of assessing your own QOL and provide guidance for interventions for improving QOL.

I not-quite-recently published a paper on QOL in MS, which is the subject of this blog post.

Quality of Life

Before I start going into details, I want to explain what I mean by “quality of life”. It describes the general well-being and happiness of a person and is influenced by many individual and cultural factors. The physical state (such as a disability) contributes to QOL as much as the psychological well-being, the social situation of a person, or environmental factors affecting the well-being of someone. All these factors can be measured independently, so we can’t just say that one’s QOL is high only if a person has a high well-being on all factors. Someone with a low physical qol (due for example to a chronic illness and reduced mobility) can have a high psychological or social QOL. This person can be happy and surrounded by a strong social support network. Therefore, it is very important to be aware of what aspect of QOL someone is talking about.

As in many psychological studies, we can use quantitative and qualitative methods to answer our research question, and QOL can be measured either way. In our study, we used both, resulting in a mixed-methods approach.

In quantitative studies, rating scales in a questionnaire can be used to measure QOL. People can rate how adequate sentences can describe different aspects of their QOL. QOL can be measured with disease-specific questionnaires, or ones for the general population. (I will give an example of the questionnaire we used in our study a little later.)

A qualitative approach would be interviewing people, asking them open-ended questions. They can answer as much as they want and new ideas can emerge that have not been asked in quantitative questionnaires. Obviously, analyzing this data and drawing conclusions from it is much more tedious, but potentially richer, painting a fuller picture.

Our Study and Results

The goals of our study were to examine gender and cultural associations with QOL, personal characteristics, and benefits from having MS among those with MS (measured with a MS specific questionnaire for measuring benefits of MS. So we wanted to know, do people with MS do experience a higher QOL if they are female than if they are male? Are there cultural differences? To answer the second question, the study was conducted in Austria and the United States, which are comparable as far as economic well-being and industrialization are concerned, but have different cultures and healthcare systems. Admittedly, part of that fact was also opportunistic: I had just completed the Austrian leg of my survey when I moved to the US, so it was compelling to run the same study there.

For our study we used a MS-specific QOL questionnaire, and various other questionnaires, in addition to a qualitative interview. An example item from that questionnaire is “I feel distant from my friends and my family”, which had to be rated on a 5-point Likert scale with options from (1) not at all, to (5) very much. We used the term ‘social-emotional QOL’ describing the psychological and social well-being of someone. In total, we included 128 participants.

We used standard statistical tests, including analyses of covariance (ANCOVA) and partial correlations for the analysis of quantitative data. For the qualitative part of the survey we transcribed and coded the interview data to identify categories in the answers.

An important caveat in our results is that the samples in the US and Austria differed with respect to sociodemographic factors. The Austrian sample was older, had MS longer and was more impaired, and study participants were inpatients in Austria, outpatients in the US. We could control for these differences in the quantitative data, but not in our qualitative data analysis. Hence, we should not directly compare qualitative data between these two legs.

Quantitative Results

We found differences between the countries regarding social-emotional QOL. We could show that Austrian study participants with MS perceived a higher social-emotional QoL compared to American participants. American participants expressed a higher self-esteem compared to Austrian participants. This personality aspect was measured with a quantitative questionnaire as well. In terms of gender differences, men reported a lower ability to express love towards others than women.

Qualitative Results

The qualitative interviews revealed additional gender differences for coping with the illness; and in experiences, expectations, and challenges related to MS. For example, the following figure shows different coping strategies participants employed when they had to deal with MS:

Strategies for Coping with MS

Acceptance’ in general was pointed out by the majority of persons asked, but ambivalent, resigned acceptance was also a common strategy. ‘Denying’ was pointed out by more men than women as a coping strategy for MS. More women than men pointed out ‘acceptance’ as a strategy. Other categories mentioned were ‘not accepted for a long time’, ‘being active’, ‘being religious’, or ‘educating myself’.

Independent of sex/gender and nationality, participants reported in the interviews that they also found benefits of having MS. They especially reported improved compassion, mindfulness, improved family relations, and lifestyle gains.

These results show that there are differences between persons with MS in Austria and the US, but there are also a lot of similarities. We hope that we can use this information for tailored interventions to improve QOL, and that we can learn from the coping strategies employed in different cultures.

If you would ask me how I cope with MS I would say ‘That’s a good question’. I personally think that I cope day by day as my symptoms are fluctuating; There is no ‘perfect’ way to cope. Most important for me is that I stay calm when I feel new symptoms coming up, focus on my breath and don’t let me get overwhelmed by this upcoming thing. I try to trust my body.

Outlooks for Future Posts

In my future blog posts I will tell stories about my research, my life with MS and why QOL is so important. Everyone can work on improving their quality of life, independent of whether one is ill or not. We all can reach the top of a pyramide, no matter how many steps we have to take and where we start.

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