Results from the “Patient Odyssey” Survey: Treatment Experience in WED/RLS

Results from the “Patient Odyssey” Survey OVERVIEW The “Patient Odyssey” survey, conducted by the Willis-Ekbom Disease (WED) Foundation and ...

Results from the “Patient Odyssey” Survey

The “Patient Odyssey” survey, conducted by the Willis-Ekbom Disease (WED) Foundation and sponsored by XenoPort, Inc., provides important new insights regarding the management of RLS/WED. The survey was designed to measure how RLS/WED impacts daily living, both from the perspective of patients as well as spouses/partners, including treatment considerations, emotional well-being, relationships and lifestyle. By assessing the findings, WED Foundation will be able to develop new tools to support patients, partners/spouses and physicians as they work together to achieve long-term disease management; the Foundation will also utilize the survey findings to help create greater understanding of RLS/WED among the general public.

The survey was sent to more than 3,000 members of the WED Foundation; members also received companion surveys to provide to their spouses/partners. More than 1600 adult patients (70% women; 30% men) and more than 670 adult spouses/partners (65% men; 35% women) responded to the survey, either online or by mail. The survey was fielded from October 7-November 8, 2013.

The following survey findings pertain specifically to treatment experience among patients. Findings related to emotional well-being, relationships and lifestyle, both among patients as well as spouses/partners, will be released in 2014.

Patient Profile

  • All patient respondents identified themselves as having been diagnosed with RLS/WED, either by a physician or through self-diagnosis, with the majority reporting diagnosis between 30-70 years of age (84%).
  • Almost one-third (35%) were diagnosed by a primary care physician, while another 39% were diagnosed by a neurologist and/or sleep specialist. 
  • Eighty-three percent (83%) started taking medication between the ages of 30 and 70, despite the fact that almost half (45%) began experiencing symptoms before age 30. 
  • Ninety-five percent (95%) of patients indicated they have taken prescription medication for their RLS/WED; of these patients, 97% were currently on prescription medication.
  • 73% of patients report experiencing their RLS/WED symptoms on a daily basis.
  • Sixty-one percent (61%) of patients report that their symptoms typically start in the afternoon or evening; however, 20% also report that the time that their symptoms start varies from day to day. 
  • In addition to prescription treatments, patients also reported taking iron supplements (43%), natural remedies (25%) and over-the-counter sleep aids (21%).
Prescription Treatment Experience
Note: the following statistics pertain to the 95% of patient survey respondents who reported they have taken prescription medication.

Symptom Control and Medication Switching
  • Only 6% of patients believed that their RLS/WED symptoms are completely controlled by their current medication(s).
  • About one-third (31%) of patients have switched medications three or more times since diagnosis.
  • Almost one-quarter (23%) of patients have tried five or more medications to treat their symptoms.
  • Patients reported lack of nighttime symptom control (46%), symptoms reappearing or getting worse after several months or years using a medication (33%), lack of daytime symptom control (24%) and experiencing unwanted side effects (23%) as the most common reasons for changing medication in the past.
  • Ninety-three percent (93%) of patients “agreed” that they wished more effective medications were available to treat RLS/WED.
  • Half (50%) report that they have been suffering with RLS/WED for a long time and nothing seems to work/adequately control their symptoms.
Side Effects
  • More than two-thirds (68%) of patients reported that they have experienced the side effect of augmentation (defined as a worsening of RLS/WED symptoms that occur after starting a prescription medication to treat RLS/WED. Particularly, symptoms may occur earlier in the day, spread to body parts other than the legs, be more intense, and/or begin after a shorter period of rest of inactivity than before treatment).
  • Sixty percent (60%) reported the side effect of augmentation to their physician, leading roughly one-third (32%) of patients to discontinue treatment and start a new medication while another 16% report that the dose or frequency of their medication was increased.
  • A little less than one quarter (22%) of patients have experienced withdrawal symptoms while discontinuing treatment.
Physician Knowledge of RLS/WED
  • Sixty-eight percent (68%) of patients “strongly agree” that there needs to be greater physician knowledge and understanding of RLS/WED.
  • Forty-two percent (42%) “agree” that their health care provider does not understand their disease.
  • About three-quarters (76%) “agree” that their doctor has prescribed the medication that is right for them.

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