Lana M Chahine1, Briana Edison2, Margaret Daeschler3, Sneha Mantri4, Steven Kahl5, Robyn Rapoport6, Arina Goyle6, Chelle Precht6, Catherine Kopil7, Connie Marras8. 1. Department of Neurology University of Pittsburgh Pittsburgh Pennsylvania USA. 2. Graduate School of Public Health University of Pittsburgh Pittsburgh Pennsylvania USA. 3. Georgetown University Washington DC USA. 4. Department of Neurology Duke University Durham North Carolina USA. 5. Tuck School of Business Dartmouth College Dartmouth New Hampshire USA. 6. SSRS Glen Mills Pennsylvania USA. 7. The Michael J. Fox Foundation for Parkinson's Research New York New York USA. 8. Department of Neurology University of Toronto Ontario Canada.
Abstract
INTRODUCTION: The off periods in Parkinson's disease have a significantly negative impact on quality of life. What the most bothersome aspects of off periods are from the patient's perspective are not well studied, nor is the degree to which screening tools for wearing off such as the Wearing Off Questionnaires (WOQs) capture what bothers patients most. METHODS: A questionnaire was deployed to eligible participants of Fox Insight, an online study of individuals with self-reported Parkinson's disease. Inclusion criteria were the use of ≥1 dopaminergic medications and an affirmative response to a question on experiencing off periods. Participants provided free-text responses regarding the top 3 most bothersome symptoms they experience when off. A determination was made regarding whether each response would have been captured by the 32-item, 19-item, and 9-item WOQs. RESULTS: The final sample had 2106 participants, a mean age of 66.6 years, 52.3% were men, and had a disease duration of 4.9 years. The WOQ-32 items covered all of the most bothersome symptoms for 53.2% of respondents. Among bothersome aspects of off not captured by the WOQs, 597 (66.2%) were specific symptoms, with freezing of gait, apathy, and memory problems being the most common. The functional consequences of off periods were most bothersome to 232 (25.7%), with walking problems being the most common. The emotional response to off periods was the most bothersome aspect to 169 respondents (18.7%). DISCUSSION: This study emphasizes the value of narrative data in understanding patient experiences, and what bothers patients most about off periods. The WOQs, although of established utility in the screening for wearing off, may not capture those symptoms most bothersome to patients.
INTRODUCTION: The off periods in Parkinson's disease have a significantly negative impact on quality of life. What the most bothersome aspects of off periods are from the patient's perspective are not well studied, nor is the degree to which screening tools for wearing off such as the Wearing Off Questionnaires (WOQs) capture what bothers patients most. METHODS: A questionnaire was deployed to eligible participants of Fox Insight, an online study of individuals with self-reported Parkinson's disease. Inclusion criteria were the use of ≥1 dopaminergic medications and an affirmative response to a question on experiencing off periods. Participants provided free-text responses regarding the top 3 most bothersome symptoms they experience when off. A determination was made regarding whether each response would have been captured by the 32-item, 19-item, and 9-item WOQs. RESULTS: The final sample had 2106 participants, a mean age of 66.6 years, 52.3% were men, and had a disease duration of 4.9 years. The WOQ-32 items covered all of the most bothersome symptoms for 53.2% of respondents. Among bothersome aspects of off not captured by the WOQs, 597 (66.2%) were specific symptoms, with freezing of gait, apathy, and memory problems being the most common. The functional consequences of off periods were most bothersome to 232 (25.7%), with walking problems being the most common. The emotional response to off periods was the most bothersome aspect to 169 respondents (18.7%). DISCUSSION: This study emphasizes the value of narrative data in understanding patient experiences, and what bothers patients most about off periods. The WOQs, although of established utility in the screening for wearing off, may not capture those symptoms most bothersome to patients.
Authors: Maria Stamelou; Mark J Edwards; Alberto J Espay; Victor S C Fung; Mark Hallett; Anthony E Lang; Marina A J Tijssen; Kailash P Bhatia Journal: N Engl J Med Date: 2011-09-22 Impact factor: 91.245
Authors: Mark Stacy; Robert Hauser; Wolfgang Oertel; Anthony Schapira; Kapil Sethi; Fabrizio Stocchi; Eduardo Tolosa Journal: Clin Neuropharmacol Date: 2006 Nov-Dec Impact factor: 1.592
Authors: Kathryn Eilene Lasch; Patrick Marquis; Marc Vigneux; Linda Abetz; Benoit Arnould; Martha Bayliss; Bruce Crawford; Kathleen Rosa Journal: Qual Life Res Date: 2010-05-30 Impact factor: 4.147
Authors: E Ray Dorsey; Kristin C Darwin; Samara Mohammed; Sean Donohue; Alyssa Tethal; Meredith A Achey; Susan Ward; Elaine Caughey; Emily D Conley; Nicholas Eriksson; Bernard Ravina Journal: Digit Health Date: 2015-06-29
Authors: Lana M Chahine; Iris Chin; Chelsea Caspell-Garcia; David G Standaert; Ethan Brown; Luba Smolensky; Vanessa Arnedo; Daisy Daeschler; Lindsey Riley; Monica Korell; Roseanne Dobkin; Ninad Amondikar; Stephen Gradinscak; Ira Shoulson; Marissa Dean; Kevin Kwok; Paul Cannon; Kenneth Marek; Catherine Kopil; Caroline M Tanner; Connie Marras Journal: J Parkinsons Dis Date: 2020 Impact factor: 5.520
Authors: Dag Aarsland; Lucia Batzu; Glenda M Halliday; Gert J Geurtsen; Clive Ballard; K Ray Chaudhuri; Daniel Weintraub Journal: Nat Rev Dis Primers Date: 2021-07-01 Impact factor: 52.329
Authors: Sneha Mantri; Madeline Lepore; Briana Edison; Margaret Daeschler; Catherine M Kopil; Connie Marras; Lana M Chahine Journal: J Patient Cent Res Rev Date: 2021-07-19