Barriers and facilitators of communication about off periods in Parkinson’s disease: Qualitative analysis of patient, carepartner, and physician Interviews

Armstrong, Melissa J.; Rastgardani, Tara; Gagliardi, Anna R.; Marras, Connie

doi:10.1371/journal.pone.0215384

Cited by 23 publications

(34 citation statements)

References 31 publications

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“…We developed questionnaires (see Supplementary Material) concerning the experience, understanding and communication about OFF periods based on data collected in qualitative interviews with representatives of each of the three groups (PwP, carepartners and physicians). The interviews (results reported separately) (12), were performed to ensure that questionnaire content covered the main issues, concerns and opinions facing these three groups. The questionnaire for physicians addressed their communication practices about OFF periods with PwP and their opinions on barriers and facilitators of this communication.…”

Section: Methodsmentioning

confidence: 99%

“…Prior to the current mixed-methods study, no identified investigated barriers of communication about OFF periods. After investigating communication about OFF periods through preparatory interviews with PwP, carepartners, and physicians (12), we undertook a survey of PwP, carepartners, and physicians to understand the nature of communication about OFF periods and barriers and facilitators to communication from all three perspectives in a larger cohort. This knowledge is needed to understand the types of interventions that may be needed to support discussion about OFF periods.…”

Section: Introductionmentioning

confidence: 99%

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Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

et al. 2019

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

et al. 2019

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“…In almost half of the responses, ≥1 most bothersome symptoms reported by patients would not be captured by the WOQs. Although the use of questionnaires to identify and communicate about off symptoms is seen as useful by PD patients, their care partners, and healthcare providers, our results highlight the limitations of using lists as tools in isolation to capture the patient experience in clinical practice. The results are also in keeping with the previous finding that patients with PD value the narrative interview as the most important facilitator of communication with their neurologist related to wearing off, and neurologists rate talking with their patients as the most important facilitator of discussions related to off periods .…”

Section: Discussionmentioning

confidence: 85%

The Most Bothersome Aspects of Off Periods Reported by Individuals with Parkinson's Disease

Chahine

Edison

Daeschler

et al. 2020

Movement Disord Clin Pract

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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.

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“…Agreement was more likely for motor symptoms; when a figurative language phrase was interpreted as representing a nonmotor symptom, agreement for which specific symptom was represented was low. This lack of agreement on over half of phrases may reflect a combination of factors, including the heterogeneity intrinsic to PD, 23 the broad range of ways in which patients experience complex PD manifestations and communicate about them, 24 , 25 and the inherently subjective nature of interpreting figurative language. 26 These and other factors may lead to misunderstandings in communication about off periods and, in turn, their suboptimal detection 12 and treatment.…”

Section: Discussionmentioning

confidence: 99%

Use of Figurative Language by People With Parkinson Disease to Describe “Off” Periods

et al. 2021

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BackgroundOFF periods are characterized by the reemergence of motor and non-motor symptoms in individuals with PD and often negatively impact daily functioning. Individuals’ experiences are diverse and may be difficult to articulate; figurative language is often used by patients to describe such experiences. Our objective was to understand how individuals with Parkinson’s Disease (PD) use figurative language to explain OFF periods and how experts interpret such expressions.MethodsIndividuals with self-reported PD participating in the online Fox Insight (FI) study were invited to participate in a survey about OFF periods. Those endorsing OFF periods were asked to describe their experiences with open-ended free text responses. Instances where any type of figurative language was used were identified and classified into themes. Three movement disorder neurologists reviewed each phrase and specified what symptoms they felt were likely represented.Results109 instances of figurative language phrases were identified across descriptions from 86 patients. Allusions to viscous materials (e.g. mud, cement) and effects of chemicals (e.g. drunkenness) were common (18.35% and 17.43% of phrases, respectively). Most phrases were interpreted by the neurologists as representing motor symptoms, but neurologists agreed on what specific symptom was being referred to for only 42 (38.5%) phrases.ConclusionTo describe OFF periods, individuals with PD use various forms of figurative language, but this language is not uniformly interpreted and understood by specialists. Given the subjective interpretation of figurative language, exploring what patients are trying to convey when they employ such language is important and could improve patient-physician communication.

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Barriers and facilitators of communication about off periods in Parkinson’s disease: Qualitative analysis of patient, carepartner, and physician Interviews

Cited by 23 publications

References 31 publications

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners

The Most Bothersome Aspects of Off Periods Reported by Individuals with Parkinson's Disease

Use of Figurative Language by People With Parkinson Disease to Describe “Off” Periods

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