Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners
Background: OFF periods impair quality of life in Parkinson's disease and are often amenable to treatment. Optimal treatment decisions rely on effective communication between physicians, patients and carepartners regarding this highly variable and complex phenomenon. Little is published in the...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2019-08-01
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| Series: | Frontiers in Neurology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/article/10.3389/fneur.2019.00892/full |
| _version_ | 1828763941289852928 |
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| author | Tara Rastgardani Melissa J. Armstrong Anna R. Gagliardi Arthur Grabovsky Connie Marras |
| author_facet | Tara Rastgardani Melissa J. Armstrong Anna R. Gagliardi Arthur Grabovsky Connie Marras |
| author_sort | Tara Rastgardani |
| collection | DOAJ |
| description | Background: OFF periods impair quality of life in Parkinson's disease and are often amenable to treatment. Optimal treatment decisions rely on effective communication between physicians, patients and carepartners regarding this highly variable and complex phenomenon. Little is published in the literature about communication about OFF periods.Methods: Informed by interviews with physicians, patients and carepartners we designed questionnaires for each group. We surveyed these parties using an online platform to investigate the frequency, content and ease of communication about OFF periods and barriers and facilitators of communication with physicians.Results: Fifty movement disorder neurologists, 50 general neurologists, 442 patients and 97 carepartners participated. A free-flowing dialogue is the mainstay of communication according to all parties. Motor aspects of OFF periods are discussed more frequently than non-motor aspects (90 vs. <50% according to both general neurologists and movement disorder neurologists). The most common physician-reported barriers to communication are patient cognitive impairment, patient difficulty recognizing OFF periods and poor patient understanding of OFF periods' relationship to medication timing. The barriers most commonly cited as major by patients were that they perceived OFF periods to be part of the disease (i.e., not a clinical aspect that could be improved by a physician), variability of symptoms, and difficulty in describing symptoms. The most commonly described facilitator (by physicians) was the input of a caregiver. Positively viewed but less commonly used facilitators included pre-visit questionnaires or diaries, digital apps and wearable devices to monitor fluctuations. The majority of patients and carepartners identified a free-flowing dialogue with their physicians and having an agenda as helpful facilitators of communication about OFF periods which they already use. The majority of both groups felt that keeping a diary and pre-visit questionnaires were potentially helpful facilitators that were not currently in use.Conclusions: Perceived barriers and facilitators to communication about OFF periods are different between health care providers and receivers of health care. Modifiable barriers and facilitators that could be implemented were identified by both groups. Future research should develop and test strategies based on this input to optimize communication and thus clinical care for this common and debilitating problem. |
| first_indexed | 2024-12-11T02:11:37Z |
| format | Article |
| id | doaj.art-00e83642596e40348aad7169615773bd |
| institution | Directory Open Access Journal |
| issn | 1664-2295 |
| language | English |
| last_indexed | 2024-12-11T02:11:37Z |
| publishDate | 2019-08-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Neurology |
| spelling | doaj.art-00e83642596e40348aad7169615773bd2022-12-22T01:24:16ZengFrontiers Media S.A.Frontiers in Neurology1664-22952019-08-011010.3389/fneur.2019.00892467812Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and CarepartnersTara Rastgardani0Melissa J. Armstrong1Anna R. Gagliardi2Arthur Grabovsky3Connie Marras4The Morton and Gloria Shulman Movement Disorders Centre and the Edmond J. Safra Program in Parkinson's Research, Toronto Western Hospital, University of Toronto, Toronto, ON, CanadaDepartment of Neurology, University of Florida College of Medicine, Gainesville, FL, United StatesToronto General Hospital Research Institute, University Health Network, University of Toronto, Toronto, ON, CanadaTensor Consulting Services, Toronto, ON, CanadaThe Morton and Gloria Shulman Movement Disorders Centre and the Edmond J. Safra Program in Parkinson's Research, Toronto Western Hospital, University of Toronto, Toronto, ON, CanadaBackground: OFF periods impair quality of life in Parkinson's disease and are often amenable to treatment. Optimal treatment decisions rely on effective communication between physicians, patients and carepartners regarding this highly variable and complex phenomenon. Little is published in the literature about communication about OFF periods.Methods: Informed by interviews with physicians, patients and carepartners we designed questionnaires for each group. We surveyed these parties using an online platform to investigate the frequency, content and ease of communication about OFF periods and barriers and facilitators of communication with physicians.Results: Fifty movement disorder neurologists, 50 general neurologists, 442 patients and 97 carepartners participated. A free-flowing dialogue is the mainstay of communication according to all parties. Motor aspects of OFF periods are discussed more frequently than non-motor aspects (90 vs. <50% according to both general neurologists and movement disorder neurologists). The most common physician-reported barriers to communication are patient cognitive impairment, patient difficulty recognizing OFF periods and poor patient understanding of OFF periods' relationship to medication timing. The barriers most commonly cited as major by patients were that they perceived OFF periods to be part of the disease (i.e., not a clinical aspect that could be improved by a physician), variability of symptoms, and difficulty in describing symptoms. The most commonly described facilitator (by physicians) was the input of a caregiver. Positively viewed but less commonly used facilitators included pre-visit questionnaires or diaries, digital apps and wearable devices to monitor fluctuations. The majority of patients and carepartners identified a free-flowing dialogue with their physicians and having an agenda as helpful facilitators of communication about OFF periods which they already use. The majority of both groups felt that keeping a diary and pre-visit questionnaires were potentially helpful facilitators that were not currently in use.Conclusions: Perceived barriers and facilitators to communication about OFF periods are different between health care providers and receivers of health care. Modifiable barriers and facilitators that could be implemented were identified by both groups. Future research should develop and test strategies based on this input to optimize communication and thus clinical care for this common and debilitating problem.https://www.frontiersin.org/article/10.3389/fneur.2019.00892/fullParkinson's diseasefluctuations“off” periodscommunicationclinical care |
| spellingShingle | Tara Rastgardani Melissa J. Armstrong Anna R. Gagliardi Arthur Grabovsky Connie Marras Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners Frontiers in Neurology Parkinson's disease fluctuations “off” periods communication clinical care |
| title | Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners |
| title_full | Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners |
| title_fullStr | Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners |
| title_full_unstemmed | Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners |
| title_short | Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners |
| title_sort | communication about off periods in parkinson s disease a survey of physicians patients and carepartners |
| topic | Parkinson's disease fluctuations “off” periods communication clinical care |
| url | https://www.frontiersin.org/article/10.3389/fneur.2019.00892/full |
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