Dystonia treatment: Patterns of medication use in an international cohort
Sarah Pirio Richardson, Ashley R Wegele, Betty Skipper, Amanda Deligtisch, H A Jinnah, Dystonia Coalition Investigators, Ami R Rosen, Mark Hallett, Vesper Fe Marie, Jung Park, Karin Mente, Hyunjoo Cho, Elaine Considine, Alfredo Berardelli, Gina Gerrazzano, Scott A Norris, Joel Perlmutter, Laura Wright, Anja Pogarcic, Joseph Jankovic, Laura Marsh, Farah Ismail, Lawrence Severt, Emily Muller, Ludy C Shih, Christine Ashton, Pinky Agarwal, Carey Gonzales, Zoltan Mari, Becky Dunlop, Julie Leegwater-Kim, Caitlin Scopa, Ron Alterman, Steve Frucht, Laurie Ozelius, Kristina Simonyan, Miodrag Velickovic, Ruth Walker, Joan Bratton, Daniel Troung, Trong-Tuong Binh Nguyen, Cynthia Comella, Tracy Waliczek, Tanya Harlow, Stephanie Gonzales, Destini Spaeth, Fatta Nahab, Lissette Moreno, Tao Xie, Joan Young, Alberto J Espay, Jaya Mishra, Ben Wissel, Brian Berman, Erika Shelton, Irene Malaty, Ramon L Rodriguez, Kyle Rizer, Amanda Elers, Ergun Uc, Jeri Sieren, Stephen Reich, Katherine Holmes, Richard L Barbano, Michael Bull, Mark LeDoux, Misty Thompson, Claudia M Testa, Virginia Norris, Daniel Demers, Alison Brashear, Charlotte Miller, Victor Sc Fung, Florence Chang, Jane M Griffith, Sylvian Chouinard, Monica Beland, Oksana Suchowersky, Paul McCann, Susan Fox, Brandon Rothberg, Marie Vidailhet, Emmanuel Roze, Cecilia Bonnet, Marta Ruiz, Bertrand Degos, Jean Michel Mayer, Kailash Bhatia, Bettina Balint, Christine Klein, Norbert Brüggemann, Sylwia Dankert, Johanna Junker, Anne Weibach, Natividad Stover, Ashlee Brooke Rawlins, Charles Alder, Amy Duffy, Stephen Grill, Erica Stacy, Joel Blumin, Lynn Wheeler, William Ondo, Chia Arif, Sarah Pirio Richardson, Ashley R Wegele, Betty Skipper, Amanda Deligtisch, H A Jinnah, Dystonia Coalition Investigators, Ami R Rosen, Mark Hallett, Vesper Fe Marie, Jung Park, Karin Mente, Hyunjoo Cho, Elaine Considine, Alfredo Berardelli, Gina Gerrazzano, Scott A Norris, Joel Perlmutter, Laura Wright, Anja Pogarcic, Joseph Jankovic, Laura Marsh, Farah Ismail, Lawrence Severt, Emily Muller, Ludy C Shih, Christine Ashton, Pinky Agarwal, Carey Gonzales, Zoltan Mari, Becky Dunlop, Julie Leegwater-Kim, Caitlin Scopa, Ron Alterman, Steve Frucht, Laurie Ozelius, Kristina Simonyan, Miodrag Velickovic, Ruth Walker, Joan Bratton, Daniel Troung, Trong-Tuong Binh Nguyen, Cynthia Comella, Tracy Waliczek, Tanya Harlow, Stephanie Gonzales, Destini Spaeth, Fatta Nahab, Lissette Moreno, Tao Xie, Joan Young, Alberto J Espay, Jaya Mishra, Ben Wissel, Brian Berman, Erika Shelton, Irene Malaty, Ramon L Rodriguez, Kyle Rizer, Amanda Elers, Ergun Uc, Jeri Sieren, Stephen Reich, Katherine Holmes, Richard L Barbano, Michael Bull, Mark LeDoux, Misty Thompson, Claudia M Testa, Virginia Norris, Daniel Demers, Alison Brashear, Charlotte Miller, Victor Sc Fung, Florence Chang, Jane M Griffith, Sylvian Chouinard, Monica Beland, Oksana Suchowersky, Paul McCann, Susan Fox, Brandon Rothberg, Marie Vidailhet, Emmanuel Roze, Cecilia Bonnet, Marta Ruiz, Bertrand Degos, Jean Michel Mayer, Kailash Bhatia, Bettina Balint, Christine Klein, Norbert Brüggemann, Sylwia Dankert, Johanna Junker, Anne Weibach, Natividad Stover, Ashlee Brooke Rawlins, Charles Alder, Amy Duffy, Stephen Grill, Erica Stacy, Joel Blumin, Lynn Wheeler, William Ondo, Chia Arif
Abstract
Objective: To determine the frequency of medication use in patients with dystonia enrolled in an international biorepository study.
Methods: In a cross-sectional analysis, we included 2,026 participants enrolled at 37 sites in the United States, Canada, Europe, and Australia through Project 1 of the Dystonia Coalition, an international biorepository study. The primary aim was to assess the frequency of medication classes recommended for treating patients with dystonia, and the secondary aim was to compare characteristics (disease type, age, sex, duration of disease, comorbid conditions, severity).
Results: Querying the database for the presence of any medication for dystonia used (includes both injectable and oral therapy), we found 73% using medications (n = 1,488) and 27% using no dystonia medications (n = 538). Furthermore, 61% of the total sample used botulinum toxin (BoNT) therapy alone or in combination. Differences were found in medication use patterns by dystonia type, with the lowest oral medication use in focal dystonia and highest use in generalized dystonia; by region, with highest BoNT therapy rate reported in Italy and the lowest in the Northeast region of the United States; and by focal dystonia subtype, with highest BoNT therapy alone in blepharospasm and spasmodic dysphonia (49%) and lowest in other cranial dystonia (32%).
Conclusions: The majority of patients with dystonia enrolled in the Dystonia Coalition Project 1 were using medications to treat their dystonia. Overall, a complex picture of medication use patterns emerged, with factors such as region, disease duration, type of dystonia, disease severity, and psychiatric comorbidities all playing a significant role.
© 2017 American Academy of Neurology.
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Source: PubMed