Survey on Adjustment to Multiple Sclerosis

Konstantina · Post by **Konstantina** » Sat Jul 07, 2007 10:09 am

Hi,

I'm a Master's student in Health Psychology at the University of Southampton in the UK. I'm researching adjustment to multiple sclerosis. The aim of the study is the development of a new scale '' the Multiple Sclerosis Adjustment Scale (MSAS) '' for assessing the process of adjustment in people with multiple sclerosis. We are trying to understand better how people with multiple sclerosis attempt to adjust to the challenges of their illness. The study will also examine the relationship of items on the new MSAS questionnaire to measures of psychological well-being, physical and psychological illness impact and the impact of MS on daily life.
I have an online survey that is part of my work and I'm looking for people with MS to take it. The link is:

http://www.psychology.soton.ac.uk/psych ... rveyID=236

I appreciate any help you can give. I can be reached at kv106@soton.ac.uk with any question.

Thanks!

Konstantina Volosyraki

Loobie · Post by **Loobie** » Mon Jul 09, 2007 8:50 am

Just took it.

Grumpster · Post by **Grumpster** » Mon Jul 09, 2007 10:31 am

Hello there,

I will take it when I have a chance later in the week. Good luck with your project. I can say that the adjustment is pretty grim and difficult for some of us. I am one of those

Wonderfulworld · Post by **Wonderfulworld** » Mon Jul 09, 2007 10:36 am

Hi Konstantina
just did it now.
One thing I have to question is the measurement of depression - in my case, in the last few weeks I've had a hugely stressful non-MS issue hanging over me that won't be resolved for a few more weeks and I do feel stressed etc, but I definitely don't have depression.
I always found that the depression tests didn't screen out the "fog" of other situations going on in your life and I wonder if you don't get a skewed result sometimes?

robbie · Post by **robbie** » Mon Jul 09, 2007 10:56 am

just did it..

2gentle · Post by **2gentle** » Mon Jul 09, 2007 1:42 pm

Just took it. Interesting.

gwa · Post by **gwa** » Mon Jul 09, 2007 2:07 pm

I did it yesterday. Hope that you learn something useful.

gwa

CureOrBust · Post by **CureOrBust** » Mon Jul 09, 2007 5:29 pm

I did the survey yesterday also, and was inspired to send her an email asking why there was NO reference to this web site. I got the following response, and thought others may be interested

I would like to express my gratefulness from your completion of the online questionnaires. I would like to inform you that the Thisis MS website put the survey on their website yesterday and I informed about this today. I have already added the reference at the end of the study. I would like to thank you very much for your comments. Moreover, the link will be on the websites until the end of July and after that we need approximately two months in order to write the results. I am very pleased to send you the summary of the findings personally in September.
Thank you very much for your time and understanding.

Best regards,

Konstantina Volosyraki

Konstantina, I am sure everyone here would love to see the results posted or a URL to their location. Thanks.

later edit... forgot the no...

Lyon · Post by **Lyon** » Mon Jul 09, 2007 6:48 pm

Thanks Cure, I'm glad you investigated!
Bob

Muu · Post by **Muu** » Tue Jul 10, 2007 4:54 am

I've just completed it. It's interesting being asked those questions. I realise that i have adjusted to my ms without realising it.
Muu

Post by **euphoniaa** » Wed Jul 11, 2007 3:11 pm

That was a great survey, but I had a h*** of a time remembering which side of that row of answer dots was a yes and which was a no, what with the brain damage and all.

I hope the fact that PWMS are generally pretty confused doeesn't skew the results.

They'd ask a question one way...and then they'd ask the same question backwards...and I had to keep scrolling up to the top so I could remember the answer choices.

For those like me who have occasional dyslexia, I have to say it wore me out to take it.

Aw geez, I just had to repost this because I had clicked the "New Topic" box instead of the "Reply" box. Now I'm really wondering how accurately I completed that survey.

TwistedHelix · Post by **TwistedHelix** » Thu Jul 12, 2007 5:22 am

Hello konstantina,
I completed it a few days ago, and I agree with euphoniaa that it would be handy if the answer categories remained permanently at the top of the screen – I also found it a little awkward to follow the lines from the question along to the answer buttons.
Also, I thought it might be useful if you had asked people to roughly quantify their disability level: for example, giving their EDSS score, which would enable you to correlate emotional state with degree of impairment.

I'm glad to see that the emotional impact of MS is being taken into account. I found this article about "chronic sorrow" more accurately sums up my feelings of sadness and melancholy than the word " depression":

The presence and meaning of chronic sorrow in patients with multiple sclerosis.

Isaksson AK, Gunnarsson LG, Ahlström G.

Department of Health Sciences, University of Örebro, Sweden.

Aim and objectives. The aim of this study was to explore the presence and meaning of chronic sorrow and the presence of depression in a fairly large group of persons with multiple sclerosis (MS). Background. MS is a chronic and progressive neurological disease with a variety of symptoms. The patients have to live with losses of different kinds. A few earlier studies have used the concept of chronic sorrow to illustrate the emotional situation of such patients. Method. Sixty-one patients were interviewed about the occurrence of chronic sorrow and, thereafter, screened for depression. Thirty-eight (62%) of them fulfilled the criteria for chronic sorrow. The interviews were analysed with latent content analysis. Results. Seven themes describe the losses that caused sorrow: loss of hope, loss of control over the body, loss of integrity and dignity, loss of a healthy identity, loss of faith that life is just, loss of social relations and loss of freedom. The sorrow was constantly present or periodically overwhelming. Only four of the 38 patients with chronic sorrow had symptoms of being mildly depressed. Conclusion. Chronic sorrow meant loss of hope, of control over the body, of integrity and of identity. The concept of chronic sorrow complements that of depression in providing important new knowledge relevant to understanding the consequences MS can have for the individual. Relevance to clinical practice. Knowledge of the meaning of chronic sorrow can contribute to the nurse's ability to give psychological support and promote a sense of hope and control in the MS patient.

PMID: 17608632 [PubMed - as supplied by publisher]

bromley · Post by **bromley** » Thu Jul 12, 2007 5:57 am

Dom,

Thanks for this post. I found the following spot on:

Seven themes describe the losses that caused sorrow: loss of hope, loss of control over the body, loss of integrity and dignity, loss of a healthy identity, loss of faith that life is just, loss of social relations and loss of freedom.

These were certainly all the feelings I had in the first 2.5 years after my dx. My hope has returned since my treatment last November and I also have hope for some of the bona fide stem cell therapies in the pipeline. There is also the notion of continuous losses with this disease which is reinforced by the EDSS scales and those graphs showing the future for those with RR and Progressive MS.

Ian

robbie · Post by **robbie** » Thu Jul 12, 2007 6:16 am

giving their EDSS score, which would enable you to correlate emotional state with degree of impairment.

I think this is one of the most relevant things when you think of how positive or optimistic a person can be about their ms.If you were to take all of us here you would find some degree of correlation between our attitudes and the amount of disability we have. I sometimes think that people who read me think that I have always been this negative but in the beginning I was as hopeful as anyone. I took interferon and had all the hope and optimism of everyone here and for years I went on with my life pretty much free of the ms burden. When the real disability came I started to realize that this was not something that I could run from and now my outlook on everything sucks. I am so glad you posted this it answers so many if not all of the reasons why we have the attitude we do..

Lyon · Post by **Lyon** » Thu Jul 12, 2007 7:41 am

robbie wrote:I think this is one of the most relevant things when you think of how positive or optimistic a person can be about their ms.If you were to take all of us here you would find some degree of correlation between our attitudes and the amount of disability we have.

Hi robbie,
One thing that seemed obvious from observing your situation, and correct me if I'm wrong, but it seems like the higher the EDSS goes and the corresponding worsening of attitude isn't always a smooth decline.

Not that there is anything different about you than anyone else enduring that situation, but by observing your situation it was obvious that the "wheelchair" brings a huge Grand Canyon drop in attitude even though at that point the EDSS didn't raise correspondingly.

On a 1 through 10 sorrow scale.....10 being absolute despair, just a rough guess, what would you say your level dropped to after you realized that you could no longer avoid the chair?

Bob