LIVING WITH RLS
Living with RLS poses many challenges. Some people struggle so much with the condition that it can have a significant adverse effect on their quality of life.
RLS is a hidden disease. This poses a dilemma for many people and some of our members have shared their RLS stories with us to show this. Those in employment can find it hard to concentrate at work due to sleep deprivation, which in turn can have a significant impact their general Quality of Life. For many people RLS is disabling but the condition is not recognised as a disability meaning they have to find ways to cope. Social events such as going to the cinema or going on a long flight are often avoided. Children with RLS can underachieve at school, meaning their life opportunities can be impacted. Pregnant women, already struggling with the adversities that can accompany pregnancy, may find their sleep is significantly impacted.
QUALITY OF LIFE
The impact that RLS can have on Quality of Life (QoL) ranges from minor to severe. Some people are so badly affected that they are unable to leave the house. It is essential that medical practitioners assess and understand the disease burden and the impact of RLS.
HOW RLS EFFECTS QUALITY OF LIFE (QoL)
The conceptual model below, adapted from that produced by Speight & Howarth in 2010 (Patient 2010; 3(3):185-203), highlights how RLS affects Quality of Life (QoL)..
REST GENERAL POPULATION STUDY
In 2005, Allen and Walters published 'Restless Legs Syndrome prevalence and impact: REST general population study'.
In all, 15,391 fully completed questionnaires were obtained.
- RLS symptoms of any frequency were reported by 1,114 (7.2%).
- Symptoms occurred at least weekly for 773 respondents (5.0%); they occurred at least 2 times per week and were reported as moderately or severely distressing by 416 (2.7%).
- Of those 416 (termed RLS sufferers), 337 (81.0%) reported discussing their symptoms with a primary care physician, and only 21 (6.2%) were given a diagnosis of RLS.
- The SF-36 scores for RLS sufferers were significantly below population norms, matching those of patients with other chronic medical conditions.
The report's authors concluded that clinically significant RLS is common (prevalence, 2.7%), is under-diagnosed, and significantly affects sleep and quality of life.
They also found that, amongst those living with RLS:
- 88% reported sensory symptoms (including inability to get comfortable, pain, urge to move)
- 76% reported sleep-related symptoms (including inability to fall asleep, interrupted sleep, insufficient sleep)
- 56% reported disturbance of daytime functioning (including fatigue/exhaustion, sleepiness, difficulty concentrating)
- 37% reported symptoms affecting movement (including twitching and jerky movements)
- 26% reported mood disturbance (including a tendency to become depressed/low)
Allen et al. Arch Intern Med 2005; 165(11):1286-92
THE IMPACT OF RESTLESS LEGS SYNDROME ON QUALITY OF LIFE
Matt Reaney, author of "The impact of Restless Legs Syndrome on Quality of Life: The patients’ perspective" makes the following recommendations:
- RLS is best understood from the patients’ perspective.
- RLS significantly impact on patients’ QoL in a severity dependent manner.
- Currently, detailed qualitative research in understanding the impact of RLS on QoL is lacking and existing QoL questionnaires may underestimate the impact of RLS on QoL due to missing domains of relevance
- It is important that the healthcare system and broader society understands the impact of RLS symptoms on QoL as it can impact significantly on general health status and on psychosocial functioning