A QUALITATIVE STUDY OF THE INDIVIDUALISED IMPACT OF RESTLESS LEGS SYNDROME (RLS) ON QUALITY OF LIFE
Author(s)
Jane Speight, MSc, PhD, Director, Matthew Reaney, MSc, Health Psychology Researcher, Olabisi Showumni, BSc, Research Assistant AHP Research Ltd, Uxbridge, Middlesex, United Kingdom
Presentation Documents
OBJECTIVES: Restless Legs Syndrome (RLS) is a neurological movement disorder characterised by uncomfortable leg sensations when at rest, exacerbated in the evening/at night, and alleviated by movement. A systematic literature review demonstrated the need for a new RLS-specific QoL instrument. This interview study forms the second step in instrument development. METHODS: The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) was used to identify aspects of life that are most important for individuals' QoL, rank their relative importance and then rate them in terms of impact by RLS. We adapted the SEIQoL to be RLS-specific and suitable for telephone administration. Twenty-six participants (mean age 61 years (range 32-83 years); 58% female) were recruited from the Ekbom Society, the UK's RLS patient support group. Telephone interviews (mean duration 54 mins (range 31-83 mins)), included the adapted SEIQoL and semi-structured questions about experience of RLS and its treatment. RESULTS: The adapted SEIQoL was acceptable to participants and facilitated an individualised investigation of the impact of RLS on QoL. On average, participants had experienced RLS symptoms for 22 years (range: 6 months to 65 years), though 35% had never received a diagnosis from their doctor. Most participants described their symptoms as severe (73%) and occurring daily (88%). General aspects of life impacted by RLS included family, health, hobbies, spirituality and social life, as well as some areas that may be more specific to living with RLS (physical ability, stress and sleep). CONCLUSION: RLS had an adverse impact on most aspects of life nominated by individuals as important for their QoL. This study supports our previous literature review, which indicated that QoL is impacted in many ways that are important to the individual and rarely assessed in existing measures. These results will be used to develop a comprehensive measure of the impact of RLS on QoL.
Conference/Value in Health Info
2007-10, ISPOR Europe 2007, Dublin, Ireland
Value in Health, Vol. 10, No. 6 (November/December 2007)
Code
PND34
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders