JOGNN
LETTER
TO THE
EDITOR
On “Heredity of Restless Legs Syndrome in a Pregnant Population” Jennifer G. Hensley
Correspondence Jennifer G. Hensley, EdD, CNM, WHNP, LCCE College of Nursing University of Colorado Campus Box C288–19 Aurora, CO 80045 [email protected] Jennifer G. Hensley, EdD, CNM, WHNP, LCCE, is an assistant professor in the College of Nursing, University of Colorado, Aurora, CO, a member of the Medical Advisory Board, Willis-Ekbom Disease Foundation, and a member of the International Restless Legs Syndrome Study Group.
Raising awareness of the genetic component of Willis-Ekbom Disease (WED) in the pregnant population as evidenced by the article “Heredity of Restless Legs Syndrome in a Pregnant Population” (Hennessy & De La Torre, 2013) is to be applauded. So that JOGNN readers have the most up-to-date information, it is important to note that the name of the condition has been changed from restless legs syndrome to Willis-Ekbom Disease. This terminology was first proposed in the United States in the spring of 2011, and it was implemented in February 2013 by the Willis-Ekbom Disease Foundation (WEDF; 2013), formerly the Restless Legs Syndrome Foundation (RLSF; 2011a). The new name, WED, “eliminates incorrect descriptors; promotes cross-cultural ease of use; adds name familiarity among physicians due to recognition of the arterial ‘circle of Willis’ at the base of the brain; responds to trivialization of the disease and humorous treatment in the media; acknowledges the first known description by Sir Thomas Willis in 1672 and the first detailed clinical description by Dr. Karl Axel-Ekbom in 1945” (WEDF, 2013, p. 2). The change from syndrome to disease also better describes WED as a neurologic disease that can manifest with mild to severe symptoms and adversely affect the health and quality of life of the sufferer.
The author reports no conflict of interest or relevant financial relationships.
270
Severity can be objectively measured by the Restless Legs Syndrome Quality of Life questionnaire (RLSQoL), which distinguishes mild, moderate, and severe sleep disturbances (Abetz, Arbuckle, Allen, Mavraki, & Kirsch, 2005). Lower scores on the questionnaire correlate with lower quality of life (Abetz et al., 2005). Symptoms can also be classified as intermittent, daily, or refractory, which is an essential distinction when deciding whether to initiate pharmacotherapy (Silber et al., 2004). Subjective severity can be measured by the
International Restless Legs Syndrome Study Group rating scale (IRLS); higher scores indicate greater symptom severity. This tool remains useful for initiating pharmacotherapy, monitoring maintenance, and deciding when to discontinue, change, or add pharmacotherapeutics (Walters et al., 2003). Women can develop WED for the first time during their pregnancies or enter pregnancy with preexisting disease (Manconi et al., 2011). As a chronic, remitting/exacerbating disease, WED symptoms, which typically originate in the lower extremities, may spread to the abdomen, chest, upper extremities, and face. Preexisting, severe WED that has spread to the arms may make breastfeeding difficult (Montplaisir et al., 1997). The Restless Legs Syndrome Foundation (2011b) provides a pamphlet discussing WED during pregnancy and possible treatments. The International Restless Legs Syndrome Study Group has completed an exhaustive review of the literature for safe treatment of WED during pregnancy and lactation. These findings should be disseminated later this year. Readers may be interested in the Willis-Ekbom Foundation revised consensus statement on the management of restless legs syndrome (Silber et al., 2013). As of September 2013, the U.S. National Library of Medicine recognizes Willis-Ekbom disease as an equivalent search term for restless legs syndrome in PubMed.
REFERENCES Abetz, L., Arbuckle, R., Allen, R. P., Mavraki, E., & Kirsch, J. (2005). The reliability, validity and responsiveness of the Restless Legs Syndrome Quality of Life questionnaire (RLSQoL) in a trial population. Health and Quality of Life Outcomes, 3, 79. Abetz, L., Vallow, S. M., Kirsch, J., Allen, R. P., Washburn, T., & Earley, C. J. (2005). Validation of the Restless Legs Syndrome Quality of Life questionnaire. Value in Health, 8, 157–167. Hennessy, M. D., & De La Torre, F. A. (2013). Heredity of restless legs syndrome in a pregnant population. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42(6), 737–748.
C 2014 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
http://jognn.awhonn.org
LETTER
Hensley, J. G.
TO THE
Manconi, M., Ulfberg, J., Berger, K., Ghorayeb, I., Wesstrom, J., Fulda,
Silber, M. H., Becker, P. M., Earley, C., Garcia-Borreguero, D., Ondo,
S., . . . Pollmacher, T. (2011). When gender matters: Restless
W. G. & Medical Advisory Board of the Willis-Ekbom Disease
Legs Syndrome. Report of the “RLS and Woman” workshop en-
Foundation. (2013). Willis-Ekbom Disease Foundation revised
dorsed by the European RLS Study Group. Sleep Medicine Re-
consensus statement on the management of restless legs syn-
views, 16(4), 297–307.
drome. Mayo Clinic Proceedings, 88(9), 977–986.
Montplaisir, J., Boucher, S., Poirier, G., Lavigne, G., Lapierre, O., &
Silber, M. H., Ehrenberg, B. L., Allen, R. P., Buchfuhrer, M. J., Early, C.
Lesperance, P. (1997). Clinical, polysomnographic, and genetic ´
J., Hening, W. A., & Rye, D. B. (2004). An algorithm for the man-
characteristics of restless legs syndrome: a study of 133 pa-
agement of restless legs syndrome. Mayo Clinic Proceedings,
tients diagnosed with new standard criteria. Movement Disorders, 12(1), 61–65.
79(7), 916–922. Walters, A. S., LeBrocq, C., Dhar, A., Hening, W., Rosen, R., Allen, R. P.,
Restless Legs Syndrome Foundation. (2011a). RLS name change:
. . . International Restless Legs Syndrome Study Group. (2003).
Willis-Ekbom Disease. Nightwalkers, 1–4. Retrieved from
Validation of the International Restless Legs Syndrome Study
http://www.rls.org/Document.Doc?id=2127
Group rating scale for restless legs syndrome. Sleep Medicine,
Restless Legs Syndrome Foundation. (2011b). Vital considera-
4(2), 121–132.
tions in treating a pregnant woman who has Restless Legs
Willis-Ekbom Foundation. (2013, Winter). New name, same mission:
Syndrome (RLS). Rochester, MN: Author. Retrieved from
Introducing the Willis-Ekbom disease foundation. Nightwalkers,
http://rls.org/document.doc?id=2206
2–3. Retrieved from http://rls.org/document.doc?id=2297
JOGNN 2014; Vol. 43, Issue 3
EDITOR
271
LETTER
TO THE
EDITOR
On “Heredity of Restless Legs Syndrome in a Pregnant Population” Jennifer G. Hensley
Correspondence Jennifer G. Hensley, EdD, CNM, WHNP, LCCE College of Nursing University of Colorado Campus Box C288–19 Aurora, CO 80045 [email protected] Jennifer G. Hensley, EdD, CNM, WHNP, LCCE, is an assistant professor in the College of Nursing, University of Colorado, Aurora, CO, a member of the Medical Advisory Board, Willis-Ekbom Disease Foundation, and a member of the International Restless Legs Syndrome Study Group.
Raising awareness of the genetic component of Willis-Ekbom Disease (WED) in the pregnant population as evidenced by the article “Heredity of Restless Legs Syndrome in a Pregnant Population” (Hennessy & De La Torre, 2013) is to be applauded. So that JOGNN readers have the most up-to-date information, it is important to note that the name of the condition has been changed from restless legs syndrome to Willis-Ekbom Disease. This terminology was first proposed in the United States in the spring of 2011, and it was implemented in February 2013 by the Willis-Ekbom Disease Foundation (WEDF; 2013), formerly the Restless Legs Syndrome Foundation (RLSF; 2011a). The new name, WED, “eliminates incorrect descriptors; promotes cross-cultural ease of use; adds name familiarity among physicians due to recognition of the arterial ‘circle of Willis’ at the base of the brain; responds to trivialization of the disease and humorous treatment in the media; acknowledges the first known description by Sir Thomas Willis in 1672 and the first detailed clinical description by Dr. Karl Axel-Ekbom in 1945” (WEDF, 2013, p. 2). The change from syndrome to disease also better describes WED as a neurologic disease that can manifest with mild to severe symptoms and adversely affect the health and quality of life of the sufferer.
The author reports no conflict of interest or relevant financial relationships.
270
Severity can be objectively measured by the Restless Legs Syndrome Quality of Life questionnaire (RLSQoL), which distinguishes mild, moderate, and severe sleep disturbances (Abetz, Arbuckle, Allen, Mavraki, & Kirsch, 2005). Lower scores on the questionnaire correlate with lower quality of life (Abetz et al., 2005). Symptoms can also be classified as intermittent, daily, or refractory, which is an essential distinction when deciding whether to initiate pharmacotherapy (Silber et al., 2004). Subjective severity can be measured by the
International Restless Legs Syndrome Study Group rating scale (IRLS); higher scores indicate greater symptom severity. This tool remains useful for initiating pharmacotherapy, monitoring maintenance, and deciding when to discontinue, change, or add pharmacotherapeutics (Walters et al., 2003). Women can develop WED for the first time during their pregnancies or enter pregnancy with preexisting disease (Manconi et al., 2011). As a chronic, remitting/exacerbating disease, WED symptoms, which typically originate in the lower extremities, may spread to the abdomen, chest, upper extremities, and face. Preexisting, severe WED that has spread to the arms may make breastfeeding difficult (Montplaisir et al., 1997). The Restless Legs Syndrome Foundation (2011b) provides a pamphlet discussing WED during pregnancy and possible treatments. The International Restless Legs Syndrome Study Group has completed an exhaustive review of the literature for safe treatment of WED during pregnancy and lactation. These findings should be disseminated later this year. Readers may be interested in the Willis-Ekbom Foundation revised consensus statement on the management of restless legs syndrome (Silber et al., 2013). As of September 2013, the U.S. National Library of Medicine recognizes Willis-Ekbom disease as an equivalent search term for restless legs syndrome in PubMed.
REFERENCES Abetz, L., Arbuckle, R., Allen, R. P., Mavraki, E., & Kirsch, J. (2005). The reliability, validity and responsiveness of the Restless Legs Syndrome Quality of Life questionnaire (RLSQoL) in a trial population. Health and Quality of Life Outcomes, 3, 79. Abetz, L., Vallow, S. M., Kirsch, J., Allen, R. P., Washburn, T., & Earley, C. J. (2005). Validation of the Restless Legs Syndrome Quality of Life questionnaire. Value in Health, 8, 157–167. Hennessy, M. D., & De La Torre, F. A. (2013). Heredity of restless legs syndrome in a pregnant population. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42(6), 737–748.
C 2014 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
http://jognn.awhonn.org
LETTER
Hensley, J. G.
TO THE
Manconi, M., Ulfberg, J., Berger, K., Ghorayeb, I., Wesstrom, J., Fulda,
Silber, M. H., Becker, P. M., Earley, C., Garcia-Borreguero, D., Ondo,
S., . . . Pollmacher, T. (2011). When gender matters: Restless
W. G. & Medical Advisory Board of the Willis-Ekbom Disease
Legs Syndrome. Report of the “RLS and Woman” workshop en-
Foundation. (2013). Willis-Ekbom Disease Foundation revised
dorsed by the European RLS Study Group. Sleep Medicine Re-
consensus statement on the management of restless legs syn-
views, 16(4), 297–307.
drome. Mayo Clinic Proceedings, 88(9), 977–986.
Montplaisir, J., Boucher, S., Poirier, G., Lavigne, G., Lapierre, O., &
Silber, M. H., Ehrenberg, B. L., Allen, R. P., Buchfuhrer, M. J., Early, C.
Lesperance, P. (1997). Clinical, polysomnographic, and genetic ´
J., Hening, W. A., & Rye, D. B. (2004). An algorithm for the man-
characteristics of restless legs syndrome: a study of 133 pa-
agement of restless legs syndrome. Mayo Clinic Proceedings,
tients diagnosed with new standard criteria. Movement Disorders, 12(1), 61–65.
79(7), 916–922. Walters, A. S., LeBrocq, C., Dhar, A., Hening, W., Rosen, R., Allen, R. P.,
Restless Legs Syndrome Foundation. (2011a). RLS name change:
. . . International Restless Legs Syndrome Study Group. (2003).
Willis-Ekbom Disease. Nightwalkers, 1–4. Retrieved from
Validation of the International Restless Legs Syndrome Study
http://www.rls.org/Document.Doc?id=2127
Group rating scale for restless legs syndrome. Sleep Medicine,
Restless Legs Syndrome Foundation. (2011b). Vital considera-
4(2), 121–132.
tions in treating a pregnant woman who has Restless Legs
Willis-Ekbom Foundation. (2013, Winter). New name, same mission:
Syndrome (RLS). Rochester, MN: Author. Retrieved from
Introducing the Willis-Ekbom disease foundation. Nightwalkers,
http://rls.org/document.doc?id=2206
2–3. Retrieved from http://rls.org/document.doc?id=2297
JOGNN 2014; Vol. 43, Issue 3
EDITOR
271
