The Impact of Restless Legs Syndrome on Quality of Life: A Qualitiative Approach

Ellie MacDonald first made contact with RLS sufferers through our website in a bid to find subjects for her university research project, outlined here. Her findings leave her ideally suited to step in as the group's new Chair Person

Dear Members,

This article is intended to recapitulate my research project and for those of you who were not able to attend the AGM in September, to bring you up to speed with things. It was a tremendous privilege to be invited to speak at your AGM this year and I hope you find some interest in what I have to report.

The main focus of my research was to investigate the impact of suffering with RLS upon patients’ quality of life.

So why did I choose to study the quality of life? Well quite simply, our quality of life is often taken for granted when we are fit and well. Healthy individuals go about their day to day living, work, rest and play and sleep and start another day.

For RLS sufferers this is very often a ‘dream’, the hope of just one day a month being able to work ‘normally’ rest ‘effectively’ and play ‘confidently’.

However, there had been very little research carried out to explore just how much people were affected by the condition, indeed if at all.

So to answer the question Why, it was initially to raise awareness of the condition and then to investigate how the massive issue of sleep deprivation impacted upon daily living, working and personal relationships.

Now you know why I studied it, I suspect you would like to know how it was done. Generally scientific research into chronic health conditions uses one of two approaches to gathering the required information; these are questionnaires and interviews. Questionnaires are easy to administer and if they are closed questionnaires requiring ticks in boxes are relatively easy to analyse the responses given. An alternative method of questionnaire is an open ended questionnaire which allows some scope for personal responses, however in scientific research, the results are very difficult to quantify and analyse, because everybody has a different idea, opinion or impression of the condition. The second approach to gathering information is to use interviews; either structured which are set questions and recording patients’ answers, or the method which I adopted which was a semi structured interview.

A semi structured interview sets out guidance questions, but allows the person interviewing to really listen to what patients are saying and how it affects them personally without being restricted to a list of so many specific questions. Semi structured interviews are far more time consuming and expensive to implement, because as I have previously mentioned, everyone is an individual with different experiences, some may be able to express it in 5 minutes, another may take an hour and five minutes. The guidance questions may be followed, or they may not be, depending on what the interviewee talks about. It is the interviewee who dictates the direction of questioning. The work does not end there, often interviews are recorded to allow the interviewer to transcribe the recording later and read through thoroughly the patient’s own experience. The beauty of such a method is that the information retrieved is often referred to as rich and factual and it really sheds light upon a genuine lived experience and highlights other additional problems patients may suffer either as a consequence of RLS or in addition to RLS.

I recruited the sufferers of RLS via the original support group website and received a phenomenal response. Unfortunately, my research was dictated by very strict timelines as an undergraduate research project. From the many expressions of interest I received, 5 males and 8 females who agreed to take part in the research with an average age of 61.4yrs.

Originally I set out to assess the impact of RLS on patients, what I did not expect was to discover the impact the condition has upon partners, husbands, wives, children etc. When I looked back at the research that had already been carried out, not just here but on a worldwide scale, I noticed that unlike other chronic health conditions, the effects of living with a person with RLS has not been investigated at all, so in effect I had the information on patients and the information on spouses too, but this area needs much more in depth research carrying out.

A common comment I heard from my volunteers was that they had struggled, often for many years, before anyone would take their symptoms seriously, and even that as they were of an older generation, that they were just dismissed and sent away with no help, information or support. Volunteers also told me how even now, they feel that they have to justify what they suffer with as being a genuine condition, and one that does affect their lives and give specific and often very personal information to highlight just how big an impact RLS has had upon their lives, both working lives and social lives and within personal relationships.

Common issues (or themes) that were raised by everyone who volunteered were, the lack of knowledge and understanding by professionals and the layman, how they felt if they were able to possess a little bit of control over the episodes and the coping strategies they adopted in order to avoid an onset of RLS – some coping strategies’ were quite startling, I even heard of people regulating their own medication in order to control periods of severe RLS. Patients were not afraid to admit that when they found a drug that would work for them, they would literally go to any lengths in order to obtain that medication to achieve just a little respite. Another theme that arose from analysing my interview transcripts were emotions; these were varied and ranged wholly on a scale from negative emotions such as anger and frustration, to happiness, in that suffering with RLS had opened avenues of friendship which they never thought were possible previously.

The need for a more accurate measure of the impact had been acknowledged in one article that was published while I was researching my work (Speight, Reaney & Showumni 2007). Any new measure needs to include all aspects of living with the condition; the painful element of RLS is not presently acknowledged at all in any of the validated measures which are used, but Karl Ekbom, in his original paper (Ekbom, 1945) stated quite clearly that painful sensations were possible, rare, but possible nonetheless. Another factor not acknowledged is how the upper limbs may also be affected. Of equal importance is the need within the United Kingdom of a prevalence study on a national scale in order to assess how many individuals are affected by RLS.

One study such as this was carried out in America by Allen and colleagues in 2005 and was called the REST study, and a replication of this in the UK would require collaboration from all areas of interest into the condition, from patients, to primary care professionals. This information may then provide the base and rationale for approaching the relevant bodies to assist in the development of regional support group meetings where sufferers may gather together, make friends, share coping strategies and begin to feel less isolated than they do presently.

So in summary, I aimed to gather information which may prove useful in developing a more up to date questionnaire for use in clinical settings, this I have done, but additionally my work has highlighted areas which need further investigation and I would welcome the opportunity to investigate the effects the condition has on close personal relationships. This research project calls for a nationwide prevalence study so that it is documented precisely how many people are affected by this debilitating condition and set in motion the resources to provide much needed help and support.

Ellie MacDonald

Chair Person

References:

Allen, R.P., Walters, A.S., Montplaisir, J., Hening, W., Myers, A., Bell, T.J., & Ferini-Strambi, L (2005) Restless Legs Syndrome Prevalence and Impact: REST General Population Study. Archives Internal Medicine Vol 165: 1286-1292.

Ekbom, K.A., (1945) Restless Legs Syndrome Acta Medica Scandinavia Vol 158:4-122

Speight. J., Reaney, M.D., Showumni, O. (2007) A qualitative study of the individualised impact of restless legs syndrome (RLS) on quality of life. Value in Health, 10(6): A