Fox Insight collects online, longitudinal patient-reported outcomes and genetic data on Parkinson’s disease

Smolensky, Luba; Amondikar, Ninad; Crawford, Karen; Neu, Scott; Kopil, Catherine; Daeschler, Margaret; Riley, Lindsey; Brown, Ethan G.; Toga, Arthur W.; Tanner, Caroline M.

doi:10.1038/s41597-020-0401-2

Cited by 77 publications

(80 citation statements)

References 10 publications

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“…Fox Insight (FI) is a fully remote study platform [ 12 ]. Participants ≥18 years old with and without PD complete surveys at regular intervals and are periodically invited to complete additional surveys targeting particular topics [ 11 ].…”

Section: Methodsmentioning

confidence: 99%

“…Several PD-related genes may be pertinent to COVID-19 infection: LRRK2 mutations may play a role in immunomodulation [ 13 ], while APOE ɛ 4 homozygosity has been associated with increased COVID-19 risk [ 14 ] and, along with GBA, may increase susceptibility to cognitive impairment in people with PD [ 15 ]. Genotype was therefore included for the subset of people with PD in FI who had those data available [ 11 ]. Information about PD diagnosis was obtained both from FI and from our current survey; respondents with conflicting answers were excluded.…”

Section: Methodsmentioning

confidence: 99%

“…We surveyed participants in Fox Insight (FI), an online study that involves thousands of people with and without PD [ 11 ], between April and May, 2020. Our study had several primary aims.…”

Section: Introductionmentioning

confidence: 99%

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The Effect of the COVID-19 Pandemic on People with Parkinson’s Disease

Brown

Chahine

Goldman

et al. 2020

JPD

145

190

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Background: The effect of the COVID-19 pandemic on people with Parkinson’s disease (PD) is poorly understood. Objective: To rapidly identify areas of need and improve care in people with PD during the COVID-19 pandemic, we deployed a survey to assess COVID-19 symptoms and the pandemic’s effect among those with and without COVID-19. Methods: People with and without PD participating in the online study Fox Insight (FI) were invited to complete a survey between April 23 and May 23, 2020. Among people reporting COVID-19 diagnoses, we compared symptoms and outcomes in people with and without PD. Among people not reporting COVID-19, we assessed access to healthcare and services and PD symptoms. Results: 7,209/9,762 active FI users responded (approximately 74% response rate), 5,429 people with PD and 1,452 without PD. COVID-19 diagnoses were reported by 51 people with and 26 without PD. Complications were more frequent in people with longer PD duration. People with PD and COVID-19 experienced new or worsening motor (63%) and nonmotor (75%) symptoms. People with PD not diagnosed with COVID-19 reported disrupted medical care (64%), exercise (21%), and social activities (57%), and worsened motor (43%) and non-motor (52%) symptoms. Disruptions were more common for those living alone, with lower income and non-White race. Conclusions: The COVID-19 pandemic is associated with wide-ranging effects on people with PD, and certain groups may be at particular risk. FI provides a rapid, patient-centered means to assess these effects and identify needs that can be used to improve the health of people with PD.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

The Effect of the COVID-19 Pandemic on People with Parkinson’s Disease

Brown

Chahine

Goldman

et al. 2020

JPD

145

190

View full text Add to dashboard Cite

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“…We submitted our online survey to all eligible participants of Fox Insight, which is sponsored by The Michael J. Fox Foundation for Parkinson’s Research 52 . Participants affirmed an online statement of informed consent prior to the study, explaining the nature and length of the survey.…”

Section: Methodsmentioning

confidence: 99%

Stress and mindfulness in Parkinson’s disease – a survey in 5000 patients

Heide

Speckens

Faber³

et al. 2021

npj Parkinsons Dis.

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Many Parkinson’s disease (PD) patients notice that motor symptoms worsen during stress, and experience stress-related neuropsychiatric symptoms such as anxiety and depression. Here we investigated which personal and disease characteristics are associated with perceived stress in PD, which PD symptoms are sensitive to stress, and we assessed self-reported benefits of stress-reducing strategies such as mindfulness. We sent an online survey to the Fox Insight cohort (n = 28,385 PD patients, n = 11,413 healthy controls). The survey included specific questions about the influence of stress on PD symptoms, use of stress-reducing strategies, and several validated scales measuring perceived stress, anxiety, dispositional mindfulness, rumination, and self-compassion. We received completed surveys from 5000 PD patients and 1292 controls. Patients perceived more stress than controls. Among patients, stress was correlated with increased rumination (R = 0.65), lower quality of life (R = −0.56), lower self-compassion (R = −0.65), and lower dispositional mindfulness (R = −0.48). Furthermore, patients indicated that stress significantly worsened both motor symptoms – especially tremor – and non-motor symptoms. Physical exercise was most frequently used to reduce stress (83.1%). Mindfulness was practiced by 38.7% of PD respondents, who noticed improvement in both motor and non-motor symptoms. Among non-users, 43.4% were interested in gaining mindfulness skills. We conclude that PD patients experience greater levels of stress than controls, and that stress worsens both motor and non-motor symptoms. Mindfulness may improve PD symptom severity, with the strongest effects on anxiety and depressed mood. These findings justify further controlled studies to establish the merits of mindfulness and other stress-alleviating interventions.

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“…Subjects were recruited through the Fox Insight (FI) study. Fox Insight study methods have been described elsewhere in detail ( 12 ). Briefly, FI is an online-only longitudinal observational study in which individuals with and without self-reported PD participate in study activities via an online platform.…”

Section: Methodsmentioning

confidence: 99%

Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis

et al. 2021

Self Cite

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Introduction: Care partners (CPs) of individuals with Parkinson disease psychosis (PDP) experience increased strain and rely on informal support networks. The objective of this study was to characterize CP responsibilities, sources of support, and peer advice.Methods: This was a mixed-methods cross-sectional study. The sample was recruited from the online Fox Insight study cohort. CPs who indicated their care recipient suffered hallucinations and/or delusions were administered a questionnaire regarding their caregiving experience to person with PDP. A free-text question asked CPs to give advice to a hypothetical peer CP. Responses to multiple-choice questions were tabulated; responses to the free-text question were grouped into advice categories.Results: 145 CP of individuals with PDP were included in this analysis, mean age (standard deviation, SD) 66.4 (9.4) years; 110 (75.9%) were women. Most (115, 79.3%) provided caregiving on a daily basis, with a range of responsibilities. Only 16 (11%) learned about PDP from a physician; communication challenges included perceived embarrassment or having to prioritize other issues in a limited appointment time. The most common peer advice was to alert the care recipient's neurologist (n = 38, 30.4%); only 8 (6.4%) suggested medication changes.Conclusion: CPs face challenges with clinician communication and learn about psychosis from a variety of informal sources. Few CPs advocate for medications to control PDP, instead preferring non-pharmacological management strategies. Peer advice favored alerting the care recipient's physician, suggesting that CPs do desire more information from the medical team.

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Fox Insight collects online, longitudinal patient-reported outcomes and genetic data on Parkinson’s disease

Cited by 77 publications

References 10 publications

The Effect of the COVID-19 Pandemic on People with Parkinson’s Disease

The Effect of the COVID-19 Pandemic on People with Parkinson’s Disease

Stress and mindfulness in Parkinson’s disease – a survey in 5000 patients

Knowledge, Responsibilities, and Peer Advice From Care Partners of Patients With Parkinson Disease Psychosis

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