TY - JOUR
T1 - Disease course and treatment patterns in progressive supranuclear palsy
T2 - A real-world study
AU - Morgan, John C.
AU - Ye, Xiaolan
AU - Mellor, Jennifer A.
AU - Golden, Keisha J.
AU - Zamudio, Jorge
AU - Chiodo, Louis A.
AU - Bao, Yanjun
AU - Xie, Tao
N1 - Funding Information:
TX is an employee of the University of Chicago. He has received research support from Michael J Fox Foundation for Parkinson's Research, Parkinson's Foundation, and NIH. He has served as a consultant for CVS/Caremark, Parkinson’ Foundation and Weston Brain Institute.
Funding Information:
This study was supported by AbbVie, Inc .
Funding Information:
Medical writing support under the guidance of the authors was provided by Carole Evans, PhD, on behalf of Adelphi Real World, and was funded by AbbVie , in accordance with Good Publication Practice (GPP3) guidelines (Ann Intern Med 2015;163:461-464).
Publisher Copyright:
© 2020
PY - 2021/2/15
Y1 - 2021/2/15
N2 - Background: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder with symptoms including vertical gaze palsy, frequent falls, abnormal gait, and cognitive/language/behavioral changes, making diagnosis and treatment challenging. Methods: Descriptive analysis was undertaken of cross-sectional, real-world data for patients with PSP provided by neurologists in France, Germany, Italy, Spain, UK, and USA. Results: Data on 892 PSP patients were obtained from patient records. Common initial symptoms included difficulty walking/maintaining gait, confusion/disorientation, loss of balance/falling, and rigidity. These symptoms and vertical gaze palsy commonly aided diagnosis. At data collection, dysphagia and blepharospasm were also very common. Mean times from symptom-onset to consulting a healthcare professional and PSP diagnosis were 5.2 and 15.0 months, respectively. General practitioners or movement disorder specialists were most commonly consulted initially; 98% of patients were diagnosed with PSP by a movement disorder specialist or general neurologist. Alternative diagnoses, including Parkinson's disease (67%) and dementia (10%), were considered for 41% of patients prior to PSP diagnosis. Non-wheelchair walking aids and wheelchairs were used by 60% and 23% of patients, respectively, with mean times from symptom-onset to use being 20.8 and 39.5 months, respectively. Symptomatic medication, most often levodopa and antidepressants, was prescribed for 87% of patients. Conclusion: This study provided information on disease course and treatment for a large number of PSP patients from various countries. PSP carries a considerable clinical burden. Diagnosis is often delayed. Consulting a movement disorder specialist might expediate diagnosis. Currently, only symptomatic treatments are available with a poor satisfaction, and there is an urgent need for disease-modifying agents.
AB - Background: Progressive supranuclear palsy (PSP) is a neurodegenerative disorder with symptoms including vertical gaze palsy, frequent falls, abnormal gait, and cognitive/language/behavioral changes, making diagnosis and treatment challenging. Methods: Descriptive analysis was undertaken of cross-sectional, real-world data for patients with PSP provided by neurologists in France, Germany, Italy, Spain, UK, and USA. Results: Data on 892 PSP patients were obtained from patient records. Common initial symptoms included difficulty walking/maintaining gait, confusion/disorientation, loss of balance/falling, and rigidity. These symptoms and vertical gaze palsy commonly aided diagnosis. At data collection, dysphagia and blepharospasm were also very common. Mean times from symptom-onset to consulting a healthcare professional and PSP diagnosis were 5.2 and 15.0 months, respectively. General practitioners or movement disorder specialists were most commonly consulted initially; 98% of patients were diagnosed with PSP by a movement disorder specialist or general neurologist. Alternative diagnoses, including Parkinson's disease (67%) and dementia (10%), were considered for 41% of patients prior to PSP diagnosis. Non-wheelchair walking aids and wheelchairs were used by 60% and 23% of patients, respectively, with mean times from symptom-onset to use being 20.8 and 39.5 months, respectively. Symptomatic medication, most often levodopa and antidepressants, was prescribed for 87% of patients. Conclusion: This study provided information on disease course and treatment for a large number of PSP patients from various countries. PSP carries a considerable clinical burden. Diagnosis is often delayed. Consulting a movement disorder specialist might expediate diagnosis. Currently, only symptomatic treatments are available with a poor satisfaction, and there is an urgent need for disease-modifying agents.
KW - Diagnosis
KW - Disease course
KW - Progressive supranuclear palsy
KW - Real-world
KW - Symptoms
KW - Treatment
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U2 - 10.1016/j.jns.2020.117293
DO - 10.1016/j.jns.2020.117293
M3 - Article
C2 - 33385754
AN - SCOPUS:85098575237
SN - 0022-510X
VL - 421
JO - Journal of the Neurological Sciences
JF - Journal of the Neurological Sciences
M1 - 117293
ER -