A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey
Background: The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson's disease.Objectives: A preliminary investigation to explore the views of Parkinson's disease (PD) patients, with and wit...
| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2020-12-01
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| Series: | Frontiers in Psychiatry |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyt.2020.602480/full |
| _version_ | 1819074692019912704 |
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| author | Katie McGoohan Anneesa Amjad Natasha Ratcliffe Sagnik Bhattacharyya Gillian Granville Matthew Sullivan Lesley Gosden Dag Aarsland Dag Aarsland K. Ray Chaudhuri Dominic ffytche Clive Ballard Latha Velayudhan Latha Velayudhan |
| author_facet | Katie McGoohan Anneesa Amjad Natasha Ratcliffe Sagnik Bhattacharyya Gillian Granville Matthew Sullivan Lesley Gosden Dag Aarsland Dag Aarsland K. Ray Chaudhuri Dominic ffytche Clive Ballard Latha Velayudhan Latha Velayudhan |
| author_sort | Katie McGoohan |
| collection | DOAJ |
| description | Background: The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson's disease.Objectives: A preliminary investigation to explore the views of Parkinson's disease (PD) patients, with and without experience of psychosis symptoms, and carers on the resumption of clinical research and adaptations to trials in light of COVID-19.Methods: An anonymous self-administered online survey was completed by 30 PD patients and six family members/carers via the Parkinson's UK Research Support Network to explore current perceptions on taking part in PD research and how a planned clinical trial for psychosis in PD may be adapted so participants feel safe.Results: Ninety-one percent of respondents were enthusiastic about the continuation of non-COVID-19 related research as long as certain safety measures were in place. Ninety-four percent stated that they would be happy to complete assessments virtually. However, they noted that care should be taken to ensure that this does not exclude participants, particularly those with more advanced PD who may require assistance using portable electronic devices. Regular and supportive communication from the research team was also seen as important for maintaining the psychological well-being of participants while taking part in the trial.Conclusions: In the era of COVID-19 pandemic, standard approaches will have to be modified and rapid adoption of virtual assessments will be critical for the continuation of clinical research. It is important that alongside the traditional methods, new tools are developed, and older ones validated for virtual assessments, to allow safe and comprehensive assessments vital for ongoing research in people with Parkinson's. |
| first_indexed | 2024-12-21T18:13:33Z |
| format | Article |
| id | doaj.art-e336d8531cf8404299062ebf3579778d |
| institution | Directory Open Access Journal |
| issn | 1664-0640 |
| language | English |
| last_indexed | 2024-12-21T18:13:33Z |
| publishDate | 2020-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Psychiatry |
| spelling | doaj.art-e336d8531cf8404299062ebf3579778d2022-12-21T18:54:44ZengFrontiers Media S.A.Frontiers in Psychiatry1664-06402020-12-011110.3389/fpsyt.2020.602480602480A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online SurveyKatie McGoohan0Anneesa Amjad1Natasha Ratcliffe2Sagnik Bhattacharyya3Gillian Granville4Matthew Sullivan5Lesley Gosden6Dag Aarsland7Dag Aarsland8K. Ray Chaudhuri9Dominic ffytche10Clive Ballard11Latha Velayudhan12Latha Velayudhan13Department of Old Age Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United KingdomParkinson's UK, London, United KingdomParkinson's UK, London, United KingdomDepartment of Psychosis Studies, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United KingdomParkinson's UK, London, United KingdomParkinson's UK, London, United KingdomParkinson's UK, London, United KingdomDepartment of Old Age Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United KingdomCentre for Age-Related Medicine, Stavanger University Hospital, Stavanger, NorwayParkinson Foundation International Centre of Excellence, King's College Hospital and Kings College London, London, United KingdomDepartment of Old Age Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United KingdomUniversity of Exeter Medical School, St Luke's Campus, Exeter, United KingdomDepartment of Old Age Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United KingdomSouth London and Maudsley National Health Service Foundation Trust, London, United KingdomBackground: The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson's disease.Objectives: A preliminary investigation to explore the views of Parkinson's disease (PD) patients, with and without experience of psychosis symptoms, and carers on the resumption of clinical research and adaptations to trials in light of COVID-19.Methods: An anonymous self-administered online survey was completed by 30 PD patients and six family members/carers via the Parkinson's UK Research Support Network to explore current perceptions on taking part in PD research and how a planned clinical trial for psychosis in PD may be adapted so participants feel safe.Results: Ninety-one percent of respondents were enthusiastic about the continuation of non-COVID-19 related research as long as certain safety measures were in place. Ninety-four percent stated that they would be happy to complete assessments virtually. However, they noted that care should be taken to ensure that this does not exclude participants, particularly those with more advanced PD who may require assistance using portable electronic devices. Regular and supportive communication from the research team was also seen as important for maintaining the psychological well-being of participants while taking part in the trial.Conclusions: In the era of COVID-19 pandemic, standard approaches will have to be modified and rapid adoption of virtual assessments will be critical for the continuation of clinical research. It is important that alongside the traditional methods, new tools are developed, and older ones validated for virtual assessments, to allow safe and comprehensive assessments vital for ongoing research in people with Parkinson's.https://www.frontiersin.org/articles/10.3389/fpsyt.2020.602480/fullhallucinations and delusionspatient and public involvement (PPI)COVID-19clinical trialpsychosissurvey |
| spellingShingle | Katie McGoohan Anneesa Amjad Natasha Ratcliffe Sagnik Bhattacharyya Gillian Granville Matthew Sullivan Lesley Gosden Dag Aarsland Dag Aarsland K. Ray Chaudhuri Dominic ffytche Clive Ballard Latha Velayudhan Latha Velayudhan A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey Frontiers in Psychiatry hallucinations and delusions patient and public involvement (PPI) COVID-19 clinical trial psychosis survey |
| title | A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey |
| title_full | A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey |
| title_fullStr | A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey |
| title_full_unstemmed | A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey |
| title_short | A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey |
| title_sort | preliminary investigation of the views of people with parkinson s with and without psychosis and caregivers on participating in clinical trials during the covid 19 pandemic an online survey |
| topic | hallucinations and delusions patient and public involvement (PPI) COVID-19 clinical trial psychosis survey |
| url | https://www.frontiersin.org/articles/10.3389/fpsyt.2020.602480/full |
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